Help Linda

July 2, 2015 by

Thanks to so many who have been so supportive.

If you would like to help Linda the link to the gofundme account is:

gofundme.com/yd3x5wk

Bad news…

July 1, 2015 by

The news from the doctor was not good.

Linda and I know stress.   Thanks to the state of Tennessee we have been separated for over year and a half after 34 years of marriage.  When Tennessee did not expand Medicaid the only way Linda could keep her insurance was for us to separate.   The story has been told in depth many times on this site.

We joke (better than crying) that we will never suffer from post traumatic stress syndrome because neither of us see any way to get “post.”

Life may never be the same but what couldn’t get worse has gotten worse.   Over the last 10-12 weeks her seizures have gotten much much worse.   She has had multiple falls and narrowly missed serious injuries more than once.  There has been multiple ER trips.   Several of the falls have been on her head. She has bruises all over her. She looks like I have beaten her.   Badly.. 

We live 25 miles apart and I no longer see her every day.   I have had periods where I have been unable to see her for as many as 3-4 days.  We live in poverty and sometimes I just can’t put gas in the car.

It is getting dangerous.   Really dangerous.    There is no one there to catch her when she falls.  There is no one there to make sure she is safe.   She has been told she qualifies for a medical caretaker just that it can’t be me.

Today was a long awaited  neurologist appointment.  Her neurologist is considered by most the best in Knoxville and a lot was riding on this visit.

He told her no medicine was helping the seizures. Her blood levels are fine. She has tried lots of different meds and what she now takes has been the best. He at least implied it will get worse. One seizure tends to lead to another. Seizures are never stable. It is either getting better or getting worse. It isn’t getting better.

Basically he said your seizures are a life problem. They are very responsive to stress and you live with unmeasurable stress.

Linda is very upset . I really think she has known for a long time it was about far more than medicine. She wonders what is she to do if the worse happens and no one is there. I remember the seizure years ago where she fell down a flight of stairs and literally broke her face. And then I try to imagine it with no one there to help and I want to scream so loud. So damn loud…

We talked about plans this morning. Bills not to pay… Ways to get more gas money. More importantly we talked about me finding a way to move closer. We might know an option but it takes money I don’t begin to have.

Over the next 8 weeks I am going to try and come up with 800-1000 dollars and hope I can move on that. I hope to start a gofundme account tomorrow and work on a couple of other angles also.

We will pray and ask that you continue to keep us in your prayers. If nothing else works I will swallow my pride and beg.

I keep hoping somehow the state will move towards health care expansion but what do you say to legislators who see everything about politics and nothing about people. But even if they do that is two years away and doesn’t help now.

I am probably looking at it wrong and it probably sounds stupid and selfish but what I really wish I had was some marriage equality. Our marriage has put my wife’s life and welfare in danger. How very very wrong.

The news was bad but tomorrow is another day. This has been a most bad day… Been a lot of them lately. So many people have been helpful and supportive and we are so grateful.

Hopefully better days are ahead. I am ready….

The fraud of Murphy

June 30, 2015 by

Murphy 2 has certainly gotten off to a  better start than Murphy 1.  Murphy 1 basically self destructed.  It had poison pills in it that made it unacceptable to many and Rep Murphy’s political grandstanding and vehement attacks on the character and motivation of anyone who disagreed with him left others turned off and unwilling to support him.   He found it matters not how many people agree if those who disagree hate you and what they believe you stand for.

The bill was not going to move with AOT as a requirement (I am not by any stretch a lawyer but after reading with the ACA  that federal efforts to coerce the states violate the  principle of federalism  I  wonder how legally defensible it would have been) so now the threat of AOT is gone and replaced with a 2% of block grant bribe.   It is the difference between threatening to fail a student for failing to do something and then telling them they won’t fail if they don’t but they can get extra credit if they do.  It is replacing the stick with a carrot.

Personally I have come to believe that AOT will not change much as a direct result of this bill. Those that have AOT will continue to have it. Those who don’t will not be convinced by this bill. $15,000,000 in grants over 50 states is really not much. New York alone pays $32,000,000 a year for its program. And when you consider if the federal government pays for start up costs that the state will be on the hook for continued costs I have to question how many budget starved states will go for that. Even with the 2% bribe I wonder. And finally when you consider in New York, the promised land of AOT, that their $32,000,000 serves only 1/3 of 1% of those served you have to wonder how many states will put a bigger AOT program high on their list of new things to do.

The big problem I see is that this bill legitimized the notion of AOT at the federal level. It let’s it in the door. It says the federal government confirms and legitimizes the notion of forced treatment for something other than danger to self and others. And for me the scarier question is not what now but what next. I somehow doubt Dr. Torrey or Rep Murphy will be content with this “victory.”

The other thing is that it officially ignores other options. Tennessee, for example, is rolling out an innovative program based on peer support (The Peer Engagement Project) that is based on keeping people out of psychiatric hospitals, training the staff of those hospitals in trauma informed care, and making people successful in the community. It will deal with far more people for far less money than any AOT program but Tennessee will not receive any 2% increase in block grant funding for its innovation. For all its hoopla about evidence-based practices the 2% bribe is antithetical to the spirit of continued innovation of working and effective services. If AOT qualifies for a 2% bonus other things should too.

Murphy tries to soften other things too. He wants to make it more possible for people to go into psychiatric hospitals and stay longer when they do but his bill seems to say this can only happen if it is “budget neutral”. How that is even possible is beyond me but it would seem obvious that Murphy has an angle somewhere. He is not going to say let’s do something but it is not possible to do unless it is really not impossible to do. He simply doesn’t understand that the ship of psychiatric hospitalization has long ago sailed and while they will probably continue to exist they will never be the core of the mental health system nor be seen as an essential part of the solution of major issues.

Using Tennessee as an example again, telling someone they can spend more money on something is not the same as telling them they must. There are many many costs associated with psychiatric hospitalization that Medicaid reimbursement rates don’t begin to touch. I don’t see Tennessee, which is a funding starved state, accepting the bill. They want more effective things that cost less and not less effective things that cost more.

Rep. Kennedy’s statement that psychiatric hospitalization is some kind of a right is ridiculous. If anything people have a right to have their rights respected and access to help that really helps. I have a friend who spent 24 years in a Florida state hospital. He somehow is not so sure his “rights” were respected.

The attack on Paimi has “softened”. Instead of basically ending their existence he is now content to let them exist as long as they can’t do anything to improve the system. In Tennessee the Paimi program was largely responsible for improvements to the adult group home system. Under Murphy their actions would have been illegal. I hope this provision is still the poison pill it was last year but I fear based on early reaction it is not.

AOT is not the poster child of Murphy 2 like it was for Murphy 1. I think this year there are two poster children: hippa and Samhsa.

Again Murphy has tried to soften hippa by saying the content of psychotherapy notes can’t be shared. Much of his effort is geared not to help the “mentally ill” but to in some way relieve the suffering of family members who have to cope with them. A big part of this has been to change hippa regulations which supposedly prevent this.

I see four problems.

In no particular order:

1. Hippa already has exceptions which allow the exchange of information. Perhaps we could learn how to follow the law before we try to fix it because it is broken.

2. What about people’s rights? Are we proposing to violate the rights of the terminally ill who don’t want or trust the help of their family members? Are they not any less emotionally stable? Non compliance with doctors orders is a major problem in all of medicine. That is well documented. How do we decide who is to lose their rights to make their own decisions however poor or ill considered. “Mental illness” is not the limit of personal instability.

3. Does it make it more or less likely people will seek help. Family conflict, family trauma, family victimization is a real issue for many people. They do not see family as kind support but as bad guys trying to hurt them, and they view the possibility of personal information being shared as an unacceptable risk . Will they seek help that, in their eyes makes them vulnerable to people they don’t think they can trust. I really question that. Murphy does not consider it.

4. It may make family members feel better but is there any evidence that giving family members this evidence helps. I have a friend who is a psychiatrist and his thoughts are worth sharing. “98% of the time it is a horrible idea. A very few times in my career I have met patients so out of contact with reality that I thought family needed to know personal information. These have been very rare as I said. Therapeutically it is a very bad idea to do anything that tells an adult they are not enough of an adult to deserve autonomy from their parents. It destroys trust and disempowers any effort to put them in control of their lives. Most of the parents who press the hardest are not those with the extremely psychotic kids but those with the greatest control issues. In 20 years of practice I can count on the fingers of one hand the amount of times putting a parent in charge of an adult child actually helped. It may be appropriate in rare circumstances but as a blanket strategy it has a lot of problems. ” I don’t know how much other doctors share his views but his points are worth considering.

Samhsa. This is really the core of Murphy 2 I think. He complains a lot about the way they do things. Just listening I don’t think he is the only one with concerns. But more than anything I think he complains about the way they see things. Samhsa has championed the idea of recovery. As part of that psychiatrists are no longer the owners of the only knowledge that matters. Recovery says three things sacrilegious to psychiatric faith: people can and do get better, they can and should make decisions about their own lives and people other than psychiatrists can and often do make real impact in the lives of suffering people. This view is I think the growing view and it threatens psychiatric power, psychiatric status and psychiatric profit. Doing away with Samhsa is about repsychiatrizing the mental health system. Ultimately that is the thrust of the entire bill.

Cynical people might point to all the money Murphy gets from groups that would financially profit and assume they are really calling the shots. I don’t know if that is really true or not. I suspect at minimum they are leading the cheers.

The opposition to Murphy seems fragmented to me. Mha is on board with Murphy it appears. They like screening and early intervention and I guess he offered enough of that to quiet any other doubts. And I think he will continue to try to pick off as many other organizations as he can.

Murphy 2 is much more dangerous than Murphy 1 was I think. He seems much more intent to not be his own worst enemy this time and unless the opposition can find much more consensus and unity than they have up to know Murphy may indeed win.

Dear President Obama: On the equality of marriage

June 28, 2015 by

Dear President Obama:

One of the quotes I heard in the last couple of days following the marriage equality case was something like “at last love can be love…”

It can’t….

I write to you today about another marriage inequality, an inequality suffered by thousands and thousands,  an inequality invisible and never talked about, an inequality no one fights to remedy,  an inequality based on federal statute: the attack on marriage of the disabled and senior citizens.

Thousands and thousands of couples in this country find themselves unable to either get married or stay married because of the financial penalties imposed on them by federal law. It is unfair. It is wrong and rather it is legal or not it is discrimination that hurts thousands of innocent American citizens.

My wife Linda and I know first hand.

We have been married for 34 years. Linda has been disabled since birth. She has epilepsy.  At one point in time 10-15 grand mal seizures were a good day for her.  She has had brain surgery to try to control the seizures.  For a while that worked, but they come back and right now are a greater and greater problem in her life.

We have never been rich but when I took social security retirement our world caved in on us.  Linda had SSI and had to maintain that at all costs to continue to receive Tenn Care (Tennessee medicaid).  We found out that my retirement took all but a few dollars of her SSI.  In the space of a few minutes meeting we lost over $700 a month in income.  My retirement (that I worked 47 years for) was Social Security told us “unearned income” and the ceiling on unearned income was half that of earned income.  They told me I could get a job to make up the shortfall but that if I earned more than $40 in a month Linda would totally lose her SSI and her insurance.  She would not survive.

We went home and figured out a budget.  With the loss of her income after bills were payed we would have less than $30 a month to live on.  In succeeding months it would get worse.  We could not buy food.  We could not buy gas for the car.  We could not buy any of the thousand things people buy in the course of a month and never think about.  And there was no way to make it better.  To get a job was to put her life in danger and make it impossible for her to access any medical care at all.

On December 26, 2013 we separated and have been separated ever since.  What we have found out since then is that tens of thousands of people are in the same boat.  We know of people that have been married for years that have had to separate in their senior years because they government basically tells them they have to.  The combination of disability by one or more of the partners and being a senior is particularly deadly.  But we also know young people who although they love each other may never be ever to marry.  It would impose  too big a risk.

I talked to one congressman who was at least sympathetic but he told me that it would cost too much to fix the problem and would probably never be addressed.  Legally right now I know of no way my wife and I will ever live together again.

Part of the problem for us would be addressed if Tennessee expanded medicaid and we are doing what we can to be part of that effort.  But greater issues remain.  We can not live on $30 a month.  We should not have to.  That should not be the penalty for us being married.  Disability should not be the cause of others having to separate or not be able to marry.

Justice Kennedy in his opinion talked about the right if people are to enjoy the liberty they should as citizens of this country no obstacles or problems should be put in the way of their becoming married should they choose to.  It is part of dignity.  It is part of respect.  It is part of freedom.  And without it how can we ever say that this is a just society.

The federal government should not be the source of the assault of its citizens.  To be disabled in this society for too many means that being married is dangerous and consigns you to a life of poverty, hunger, and fear.

The decision of the Supreme Court is a huge step.  But few people even know about this issue.  People, if they know at all,  turn a blind eye and are sorry the law is so harsh.  Mr. President please take a look at the issue and please, please make the thousand and thousands suffering also have a fair chance.  Marriage equality for all.

Yours truly,

Larry Drain

Maryville, Tennessee

If I can’t talk to the people who agree with me how can we talk to those that don’t: reactions to the cannibalism of mental health advocacy

June 27, 2015 by

I recently watched the initial hearing this year on the new Murphy Bill and for the very first time I thought he might win.

I thought it looked like he had learned a key lesson.   He did not lose last time because enough people did not love his bill.    A lot of people did.  He lost because too many people hated it.  And what I  saw was a conscious effort to dress basically the same bill in less hateful clothes.   The Aot provision became something you would be paid extra for instead of something you would be punished for not having and the defining feature of something so many hated was blunted.  What Murphy seems to have finally figured out is that many people want to do something on mental health legislation and if he wanted to be successful he had to do something about a poison pill that made it impossible for people to  say yes.

The hearing seemed to be more self congratulatory than anything else. The harsh and attacking rhetoric, at least for this day, seemed muted and largely absent. The fingerprints of Dr. Torrey did not seem everywhere.

There are many good and important reasons to question this bill. In my mind it has more than one poison pill but I have questions about how well or how effectively the case will be made.

The problem is us. Many of the people against Murphy have differences with other people who are against Murphy and spend as much time arguing with each other as they do with Murphy.

My recent post about the cannibalism of mental health advocacy addressed this. One friend described mental health advocacy as little more than a circular firing squad and I wonder if there is not some truth on that.

I got a bunch of reactions from people on this post. Some identified as antipsychiatry and some did not but many common concerns were shared.

Murphy does not need to win. He just needs to wait on us to lose…

If we can’t stand each other what we stand for won’t matter….

We are arguing about places on a boat while doing nothing to stop it from sinking….

We can’t count on Murphy self destructing again….

How can we expect others to treat us fairly when we do no better with each other….

And my favorite:

If I can’t speak with the people I agree with with how can we speak to those that don’t…..

On justice

June 26, 2015 by

In his opinion about the ACA John Roberts ignited a fire storm from conservatives across the country.   The nicest thing he was called a traitor.   Some actually thought he must have been blackmailed by the President.   How could this decision be explained otherwise they wondered. This couldn’t be what he really thought.

For Roberts thank God this case was not about how much he either liked or didn’t like the law.   I don’t think his motivation had anything to do with this specific law at all.   I think it had to do with how he felt about The Law.   It had to do with believing what you saw instead of seeing what you believe.   It had to do with using the facts to make a decision instead of making a decision and looking for “facts”  to  justify it. It had to do with justice.

The  case itself was ridiculous.   Plaintiffs picked out 6 words in a 2000 page bill to make it sound like those who wrote the bill were saying something they never said.  It was never discussed,  never thought of,  never voted on and never implemented.   It was a fraudulent,  back door attempt to defeat something by “rule of law”  they couldn’t legislatively touch. Even the people who had voted against the ACA knew no one had ever voted for what the plaintiffs claimed. The whole thing was so stupid and it was a matter of serious debate for the Court. And the lives of millions hung on this serious debate.   The potential for widespread and debilitating chaos was so very real.

It was ironic that Justice Scalia accused him of agreeing simply because he liked the law when his own blinding hatred of the law left him defending a cheap fantasy created by people who didn’t care about the truth or how many people they hurt trying to get their way.

Scalia accused him of judicial activism (strange coming from a man who voted to allow billionaires to try to buy our elections) but Roberts simply refused to sell out The Law to destroy a law.

Roberts chose justice.   And because of it millions of people have a real chance at life, not an unnecessary and cruel death,  liberty not slavery to illness and financial catastrophe and missed opportunities,  and the pursuit of happiness instead of a desperate fight to find resources to get adequate care denied them because of their financial status.

The planned and systematic death and sickness of those who are poor and vulnerable can not  be the policy of a decent and just people.

Justice Roberts said yes to justice.

He said yes to justice.

On the cannibalism of advocacy

June 24, 2015 by

hopeworkscommunity:

Dedicated to Joel Sax. An old post still too true

Originally posted on Hopeworks Community:

A friend wrote me crushed.  She posted something on Facebook talking about how she believed medication had helped.  She couldnt believe the response.  It wasnt just that people told her she was wrong.  She was told she was stupid, dishonest, blind and a liar.  And those were not the worst things.  She told me she felt like someone had tried to eat her alive.  I dont think she will share her feelings anytime soon.

All I could tell her was that I knew how she felt.  I have also been told that I was stupid, blind, dishonest, a liar and many worse things.  I have tried to reason and respond to people who called me names thinking that if I could just get them to understand what I was saying that we could find some common ground.  And many, many times that did work.  But many times it has not.

View original 294 more words

“What if?”…..The assisted outpatient treatment of Dylann Roof…

June 24, 2015 by

This has been a week of “what ifs”.

This past Sunday I found myself looking at people in church I didnt recognize and wondering “what If?”

Several years ago in Knoxville a man came one Sunday to a Unitarian Church to “kill some liberals.”  A friend of mine was there that morning and this week I read her terrifying account of that morning.  She left the main service minutes before the shooting started to attend to a younger child and was in an adjacent small room when she heard the first shots.  She talked about shutting the door and blocking it with her body and hoping that was enough to keep him out.  And she talked about her child and I wondered “what if?”

I listened to the endless news of Charleston this week.  I wanted to know how Dylann Roof became Dylann Roof.

I heard one person describe him as “whacked out…”  Others said he had to be mentally ill…he had to be.  Nothing else made sense.

I listened to his hatred and I listened to how he had been taught to hate so well.  And I wondered what pill, what doctor, what treatment was supposed to protect us from that hatred.

There is a lot of talk right now about how things like AOT (assisted outpatient treatment) can and would save us from such tragedy.  And I wondered about the assisted outpatient treatment of Dylann Roof and “what if…”  What if he had been committed?  What if he had to go and talk to someone?  What if someone had tried to tell him that his hatred was a symptom of something else?  What if he had been told he had to take medication?  What if he had told that if he didnt cooperate he would be put into a hospital?  What if?

And it all seemed so naive and self serving.  I have known many psychiatrists over the last years.  I have known many therapists.  I have known case workers and have worked in mental health facilities of every sort.  None of them would have protected me from Dylann Roof.  I dont know a single mental health professional who would tell me he could make people hate less and none of them would have told me that racism was a disease they had a pill for.

Who really believes that someone who is so full of hate and rage as to kill 9 people, a crime not of the moment, but of long making could be dissuaded or have the way he made sense of life changed by assisted outpatient treatment.  Who really believes that AOT would have overrode all he had learned to do, all he had learned to be, all he believed>

And it struck me.  The dilemma of Dylann Roof was not that he was “whacked out.”  It is that he wasnt.  He doesnt exist apart from the culture he grew up in.  He doesnt exist apart from the context of his life.  Hatred and rage were not what he had.  They were what he was.  And he saw his actions as a defense of who he was and what he thought life should be about.

Who really believes that psychiatry can be and should be our first line of defense against human evil?  Everything I have read over the last week (and I have read a lot) says that psychiatry cannot even predict who will be violent and who will not. Psychiatric predictions are no better than chance.  Even if you knew what to do (and I see no proof of that) how can you protect people from what you cannot see?

Racism is evil.  To medicalize hatred….to medicalize  rage not only dishonors those that are victimized by it, but in the end leaves us defenseless before the next Dylann Roof.

Back to the cliff….again coercion

June 23, 2015 by

IN my last post I used the metaphor of some people living on the cliff.  Multiple factors increase the stress, the pressure, the misery, the general unhappiness and the danger of life.  They live life on the verge of big problems (falling off the cliff).  Something interferes with life and sometimes making it through the day unscathed is, or it least it seems like, a major miracle.

Some people believe that coercive interventions should be the core of the mental health system.  Far too many people fall off the cliff.  Far too many dont even realize they have fallen off the cliff.  Far too many people are willing to seek help for falling off the cliff and when they do they far too often do not follow through with the recommendations of that help.

Another way to look at things though is not that too many people fall off the cliff.  Too many people live on the cliff.

In the previous post I talked about some of the things that tend to put people on the cliff.

In this post I address getting off the cliff.

Some of the things that make life harder are social things: poverty, lack of housing, lack of food, lack of access to health care etc.  They are about justice and a fair chance at life.  The experience of chronic injustice has a major impact on the way we lead our lives.  If you want to help people find a better life you must give them a better space to live in.  Increasing justice in life circumstances is basic to helping people who must live and cope everyday with that lack of justice.  A large part of mental health advocacy is increasing the experience of justice in the lives of those who have known precious little of it.

Part of that injustice is what it has come to mean to “have a mental illness.”  That label for many defines the person they can be, the opportunities and treatment available to them from others and what others can expect from them.  It is a label with real consequences they influences how you are treated, the jobs you have, whether or not you are accepted in many social groups, your relationships with others and a million other things.  It affects how the police treat you, the degree to which doctors listen to you and take you seriously and the rights other people feel like you should have.

Some people believe nothing will really change.  They have little hope and less faith.  No promises have worked out.  No answers have really ever answered anything.  I know I have been there.  It is not that you dont want things to get better.  At its worst you dont want to get disappointed again by wanting anything.  Life is about finding some way to feel better or some way not to feel at all.

Getting off the cliff is first about believing there is a chance to get off and deciding to take a chance.  The first step is to believe it can get better and to buy into that possibility.

The coercion people will tell you that people with serious mental health issues just dont invest in the process of treatment.  Some will tell you they cant because of some kind of brain damage they are assumed to have.  Kind of  a “,,,you dont listen to me and that is proof you are brain damaged…” statement.

But they seldom talk about investment and what has to be true for someone to invest in anything.  For people to invest in anything they must come to believe several things are true.  For some people their experience of the mental health system is that none of these things are true.  For some people their experience is that all these things are true.

1.  They must come to believe there is something in it for them.  There is a something worth doing, worth having or worth learning that makes a difference in their life, that they can do and  is worth the effort to do.  In some real way “help” must be a source of opportunity and not a source of deprivation or disappointment.

2. They must come to believe they have something to give.  They have an integral, important and valued role in this “help.”  It is not something people do to them, but with them.  They are empowered.  They have real choices.

3.  They must come to believe that it is safe.  This does not mean it may not be hard.  It doesnt even mean there is no danger involved.  It means there is some basic trust that it is what it seems to be and there is some reasonable chance with effort, persistence and support that some things in life can get better.  It means that you believe that people are being honest with you both about what they know and what they dont know.  Before you trust what people are trying to do you must first trust the people trying to do it.

4. They must come to believe someone cares.  They are a person and it matters that they are a person.  They are more than a diagnosis, more than a history.  Someone believes that they as a person are important and that importance is the source and starting point of everything.

The things, the situations, the people I “buy into” satisfy these conditions.  The therapists that have helped satisfy these conditions.  The relationships that are important to me satisfy these conditions.  Those that dont I leave, dont listen to and treat as unimportant.   I have know important psychiatrists.  I have known very unimportant psychiatrists.

Recovery (getting back from the cliff) is about preventing the things I can prevent, coping with the things I cant prevent, and surviving the things I cant cope with.  It is about trying to change what needs to be changed and learning to live with what cant be.  It is about knowing that many things are difficult and may be always difficult, but that I am more than what is difficult for me.  It is about knowing that life is not a symptom, that what I feel, what I value and what I think is as valid for me as it is for anyone else.  It is about knowing that other people can care about me and me about them.  It is about knowing my life is not denied purpose.  It is about knowing I may sometimes come to the cliff and I may even sometimes fall, but that life can and is so much more than that.

Falling off the cliff…..more on coercive interventions

June 22, 2015 by

Note- The analogies used in the post below are not original to me.  I first read them in a book called, “Health, Medicine, and Justice” written by Joshua Freeman.  I use them in a little different way than Freeman does but I think our message is the same.  Much thanks to Art Sutherland for making me aware of this book.  It is a book that anyone who cares about justice and the medical system should read.

One of the greatest inadequacies of the medical model is the idea that you can truly understand someone’s behavior by figuring out what categories to put in in, what labels to apply to it.  It is not possible to understand how someone lives apart from the context of their life.

All of us live with distress, with pain, with stress.  All of us know unhappiness.  All of us know something about deprivation and threat. For some of us at some seasons of our life there seems to be little else.  For some of us the stress of getting by, of getting from the beginning of the day to the end without catastrophe, without loss and attack is simply overwhelming.  Life for some is about what is going to go wrong next and how are you going to cope and will you make it or not.  It has been that way for me more than once.

Everybody lives with a different degree of risk.  Life is harder for some of us than for others.

Some of us live on the cliff.  People who live on the cliff are the ones most likely to fall off.

There are many things that take us closer to the cliff.  For some the cliff seems a permanent residence.  For others it seems more a place visited than a place lived.

1.  Past experience.  Aversive childhood events (ACE’s) have a profound influence on the context of our lives.  Studies of people who face many problems in their lives often show a history of ACE’s.  Where you have been affects where you are.

2. Poverty.  Being poor affects your experience of life as much as any single thing I believe.

3. Housing.  Lack of safe, affordable housing affects your sense of what life is about, who you are and what you can expect from other people.  Aside from the day to day overwhelming stress of lack of good enough housing it tells you a lot about how much you matter and how threatening daily life can be.

4.  Food.  People dont do well in life who dont have enough to eat and who dont have enough healthy food to eat that they can afford to eat.  If eating enough, eating often enough, or what you can afford to eat are part of the daily stress of living then it is likely that the daily stress of living is overwhelming to you.

5. Health.  Do you have a real opportunity to be healthy?  Many of the above items relate to your opportunity to be healthy, but in this case I mean do you have the opportunity to get adequate and effective health care?  People who cant get preventive care, people for whom little deals become big deals, people who cant get care for serious conditions often face growing problems.  People who suffer,  who with a fair access to help would not necessarily suffer, live often with a overwhelming degree of daily stress.  They know what it means to hang on.

6. Jobs.  Do you have a job that enables you to get what you need to lead anywhere close to the life you want?  Do you have to work 2 or 3 jobs to make ends meet? As one person told me:  “I am forever a window shopper at the store of life.”

7.  Danger.  How much do you live with daily danger?  Every community has its own dangers.  How much does your experience of daily danger define the context of your life?

8. Race.  It shouldnt make a difference.  It does.

9. Past experience with help.  When you have tried to get help in the past do you find you could access help that mattered? Did “help” make things worse.  Was the system more a source of threat or a source of opportunity to make life better?

10. Social support.  People do better when they have a source of meaningful and trusted connection with others.  Do they have a sense of in someway mattering or is their daily experience that they are alone and dont fit in?  Life is what we do with other people and when there is not a sufficient “with” it is much more likely life will be hard.

11. Trauma.  This is also dealt with in the first item but in this instance I mean more ongoing trauma.  Are you living with ongoing injury and hurt?  Is life about attack and defense for you?

12. Relationships.  Does someone care?  Is there someone that it matters to that you care?  Are you alone?

13. Drugs.  Sometimes the things we do to medicate our misery in the end bring the most misery to life.

14. Personal strengths and weaknesses. All of us have things we are better at and worse at. We all have our burdens. We are not blank slates. Somethings feel like destiny. Others feel like challenge. What we make of what we got matters more than what we got.  I recommend you look at the research of psychologist Carol Dweck if you would like to read further on this.

All of these things and more are risk factors.  They take us closer to the cliff.  Much of life is about what we make more likely or less likely and while it might be simplistic to say that any of these things by themselves is the cause of disaster in life they certainly make it more likely.  All of them in some way push us closer to the cliff and make it more likely we will fall off.

There is one line of thought that says simply that people dont fall off the cliff- they are propelled off it by a “mental illness” that is chronic in nature, that most of them dont know they are being propelled off the cliff, that the most life can be for most of them is to perpetually teeter on the edge and that those worst off and most serious life will always be at the bottom of the cliff.

Psychiatric hospitalization is basically a bottom of the cliff intervention.  To my knowledge there is no evidence that it helps people to move back from the cliff.  Proposals for the “new asylums” are basically proposals to make people comfortable at the bottom of the cliff, that they will never make it back from the cliff and kindness dictates we not try to make them.

There is another analogy from the book I really like.  A man sees a body floating down a stream.  A few minutes later another body is coming down the stream.  Then another…and another…and another.  By now a whole crowd of people are trying to get people out of the river.  And it is becoming really obvious they cant keep up the pace.  One man quietly speaks up.  Perhaps we should go upstream and see what is putting people into the water…..

Coercive interventions are downstream interventions.  Recovery is an upstream intervention.

Deal with what makes catastrophe more likely.  Deal with differences that make a difference.  You cant help people to build a better life independent from the context of their life.  Things will still get messed up.  Human beings have an amazing propensity to solve life by messing it up and then coming up with a thousand good reasons they had to deal with it but still it matters.  If you make distress, stress, pain and misery less likely to happen they tend to happen less likely.

Look upstream.

Move people back from the cliff.

Justice matters.

Opportunity matters.

Empowerment matters.

Learning matters.

Support matters.

And hope really matters.

Some time ago I wrote a post called “A mental health bill of rights”.  It was an attempt to describe at least in part an upstream mental health system.  It is one way to look at the task of helping to move people back from the cliff:

1.  I have the right to be treated with dignity and respect regardless of the severity or numbers of problems or difficulties I may have.
2.  I have a right to be treated with honesty.  I should be able to  expect not to be manipulated into any particular course of treatment.  My questions and concerns should addressed honestly and openly.  The treatment recommended me should be a function of my needs  and not the philosophical tenets or personal prejudices of providers.
3.  I have a right to have access to all the information I need to make informed choices about any treatment I might seek.  The positives and risks of any prescribed medication should openly be explained.  Decisions I make about me should be honored and accepted.
4. I have a right to expect that the treatment recommended for me be a function of my assessed needs and not simply a function of my ability to pay for those services.
5.  If legally I am judged not able to make decisions for myself any involuntary treatment should be based whenever possible on guidelines set by me when I was legally competent.  These guidelines may include choices of facilities and medications to be avoided.
6.  I have a right to have access to the most effective treatment possible.  This treatment should focus on helping me to developing the skills and tools I need to maintain stability in my community, personal independence, and success.
7.  I have a right to be honest about any issues I have and seek the help I need without fear of retribution, prejudice or discrimination.  I should not have to fear loss of job, housing or social position based solely on a mental health diagnosis.
8.  I have a right to expect adequate and effective health care.  I should have a right to expect that my complaints and concerns be taken seriously and not dismissed as a symptom of my issues.
9. I have a right to expect that any professional dealing with me will realize that there is a significant chance that trauma and injury have been important issues in my life and that they have training on helping people deal with these issues and a trauma informed sensitivity in their interactions with clients.
10. If I am incarcerated or come into contact with the correctional system I have a right to expect that the staff I contact will be trained and skilled in dealing with the types of situations they may encounter me in.  I have a right to expect to be safe and to expect not to be traumatized in my interactions with them.  I also have a right to expect I will have continued access to needed treatment.
11. I have a right to expect access to substance treatment as needed.  I may well have more than one issue to deal with and each issue should be treated as important in and of itself and not simply as a symptom of something else.
12.  I have a right to expect I will be treated as more than a mental health diagnosis.  My values, my goals, my ideas and my sense of purpose in life should never simply be regarded as a symptom of whatever issues I have.  Many many things may be difficult for me but nothing that is difficult for me makes me deficient as a person.
13. I have a right to expect to be treated like other people can care and connect with me and I can do the same with them.
14.  I have a right to expect that others will treat me as having the capacity to develop the skills and tools that will enable me to find a better life.  Hope will be treated as a realistic perception of me and my life.
15.  I have a right to expect that all the problems in my life will not be reduced to expressions of mental health issues.  Poverty, hunger, homelessness, racism, crime and many other things are very real problems.  I am entitled to same chances to fairness and justice as anyone else.

How we care about and how we care for people matter.  If we did a better job helping people stay off the cliff perhaps there would not be as many debates about what to do when they fall off.

I believe

June 21, 2015 by

The post below was sent to me by email by a friend who forwarded it from someone else.  There is no author mentioned, but I thought it was fantastic and wanted to share it with as many people as possible.

Birth Certificate shows that we were born
A Death Certificate shows that we died
Pictures show that we lived!
Have a seat . . . Relax . . . And read this slowly.

I Believe…
That just because two people argue,
it doesn’t mean they don’t love each other.
And just because they don’t argue,
it doesn’t mean they do love each other.

I Believe…
That we don’t have to change friends if
we understand that friends change.

I Believe…
That no matter how good a friend is, they’re going to hurt
you every once in a while and you must forgive them for that.

I Believe…
That true friendship continues to grow, even over
the longest distance. Same goes for true love.

I Believe…
That you can do something in an instant
that will give you heartache for life.

I Believe…
That it’s taking me a long time
to become the person I want to be.

I Believ e…
That you should always leave loved ones with
loving words. It may be the last time you see them.

I Believe…
That you can keep going long after you think you can’t.

I Believe…
That we are responsible for what
we do,  no matter how we feel.

I Believe…
That either you control your attitude or it controls you.

I Believe…
That heroes are the people who do what has to be done
when it needs to be done, regardless of the consequences.

I Believe…
That money is a lousy way of keeping score.

I Believe…
That my best friend and I can do anything or nothing and have the best time.

I Believe…
That sometimes the people you expect to kick you
when you’re down, will be the ones to help you get back up.

I Believe…
That sometimes when I’m angry I have the right to be angry,
but that doesn’t give me the right to be cruel.

I Believe…
That maturity has more to do with what types of experiences you’ve had
and what you ‘ve learned from them and less to do
with how many birthdays you’ve celebrated.

I Believe…
That it isn’t always enough, to be forgiven by others.
sometimes, you have to learn to forgive yourself.

I Believe…
That no matter how bad your heart is broken the world doesn’t stop for your
grief.

I Believe…
That our background and circumstances may have influenced who we are,
but, we are responsible for who we become.

I Bel ieve…
That you shouldn’t be so eager to find
out a secret. It could change your life Forever.

I Believe…
Two people can look at the exact same
thing and see something totally different.

I Believe…
That your life can be changed in a matter of
hours by people who don’t even know you.

I Believe…
That even when you think you have no more to give, when
a friend cries out to you – you will find the strength to help.

I Believe…
That credentials on the wall do not make you a decent human being.

I Believe…
That the people you care about most in life are taken from you too soon.

I Believe…
That you should send this to all of the people that you believe in, I just
did.

‘The happiest of people don’t necessarily have the best of everything;
they just make the most of everything.

What if it were true…..

June 21, 2015 by

I have a arm bracelet that says,   “Every life matters…”  What if it was true?

If it was true then….

we would not be pre-occupied with how to label people or afraid of how they will label us.

the value of  kindness would be something we didnt have to prove, because it would be self evident.

politics would be more than name calling and noise.

radio and TV personalities would be judged by something else than the total disdain they have for people who dont agree with them.

women would be more than pieces of meat.

men would not have to count how many times they “make it” in order to make sure they are men.

groups would be judged by how they treat people  outside of the group instead  of how they keep people outside of the group.

we would know people by more than the names we call them.

we would be able to look in the mirror and tell there are more people than just “me.”

the point of conflict would be to find solutions rather than “beat” those we are in conflict with.

listening would be part of every conversation.

we would know that good news for someone else is good news for us too.

of the things that matter we would find there is more that enough to go around.

we would know there is more to people than how they threaten us or dissapoint us.

we would know we can be the miracles in each others lives.

courage would be much more easily found and much more frequently noticed.

hands would be for reaching out instead of fingers for pointing.

love would not be how we think about acting.  It would be how we act without thinking.

What if it was true?

The day after Charlestown

June 20, 2015 by

The first day after Charlestown has ended. Some remarkable things happened. The words of the families of the victims to the killer were inspiring and gave hope in a day needing hope. Hatred and violence have become everyday and seem beyond action,  at least anything we have the will or commitment to do.   But the families showed in the worst of circumstances that even if hatred and violence destroy they need not win.  We need not let them define us.  Bless those families.

There were some really not remarkable things too.   But none of them were really surprising, maybe sad but not surprising.

In a day with so many people saying so many stupid things the NRA made its bid to remain the stupidest of the stupid.   A board member explained it was all the fault of the murdered pastor.  He voted against guns in churches.   He brought it on himself…

The man who came to shoot black people to start  a race war got left out of his equation.  The board member thought people should come to bible study ready to shoot back. There is something particularly slimy about people who use tragedy to promote their own political agenda… something about people who say he wouldn’t have died if he had just listened to me inspires something way past vomit.

The NRA really needs maniacs and crazy people. Without them to blame too many people might do what Barack Obama did – note that we seem to be the only country swimming in gun death and tragedy. And ask why. Paranoia is a survival behavior for the NRA. Their appeal and their power fail if we don’t buy in.

Jeb Bush remains confused. Like many other things he neither know what what to say or what to think. He wants to study it further but thinks it might be possible that a racist shot black people because he hates them.

Rick Perry thought it was an accident Don’t ask I can’t explain.

There were people who thought it was an attack on religion and faith. Many of them were people who try to pass off their own bigotry and hatred as a defense against what they are sure is an attack on their own religion and faith. And the killer was real clear about where he was coming from.

People, suprisingly lots of people, had trouble believing that hatred matters, that racism had an impact. The confederate flag still flies high in South Carolina. The killer of 9 black people is being kept in a cell next to the policeman who shot a black man in the back a couple of months ago. And it is politically too difficult to lower a flag???

It is the most terrible of terrible tragedies, but the families today told us something important today. What we do next matters. How we respond defines the kind of people we are and the people we are defines what are world can become. Evil is real. The problem with hatred is not just that it leads us to hurt people but that it makes it seem like the only thing that makes sense.

Grieve for today but pray for tomorrow. May God bless each and every one of you.

Charleston

June 19, 2015 by

Like everyone else I have listened to the news from Charleston.  A friend told me when he first heard about it:   “If the shooter was a Muslim he would be a terrorist, if he was black he would be a thug, if he was hispanic he would be an illegal alien, but since he is white….while since he is white he will most assuredly be mentally ill.”

For many people it would be easier if he was “mentally ill.”

Then it would not be about racism….

Then it would not be about guns….

Then it would not be about a political climate that demonizes and dehumanizes anyone different from you…

Then it would not be about a culture that glorifies violence as a way to make your point…

Then it would not be about groups that have made a cottage industry out of hatred and fear…

Then it would not be about a state that flies the state flag at full mast in the face of unspeakable tragedy and that cant understand why others think the tragedy has something to do with the character of the state and its history of violence towards blacks.

For some it would be about mental illness and why did we not force him to take a pill that would make it alright and how long will we let the maniacs run free.

For some it would be about not enough guns and not understanding how senior citizens sitting in a church for a bible study would not come armed and ready to shoot back.

We live in a country divided and the scariest thing is how many people celebrate that division.  The scariest thing is how many people think that hatred is the only rational response to people different from them.  Our political system is about who can point fingers the loudest and longest.  It is about how well our leaders tell people they have a reason to be scared and they need to vote for them because they will protect them.

When hatred becomes righteousness the seeds of murder have been planted.  And when we no longer celebrate or find value or truth in the things that connect us, that tie us together well…..

I think that if you teach people they have reason and justification to hate, that there is no reason not to act on that hatred and indeed ample reason to act on it, if you romanticize and preach violence as a way to address hatred, if you make the tools of violence easily and plentifully available, if they can convince themselves the consequences of that violence are positive or even righteous the real question is not “why Charleston” but who is next.

Dylann Roof is responsible for Dylann Roof.  We did not make him. There is no factor, no reason that gives him a pass.  But there are more like him….Maybe a lot more.  But if we did not make him did we at least not make him more likely….I dont know.

Hatred is not a mental illness.  It cannot be cured.  There is no pill nor therapy.  But it is like a plant.  It must grow to live.  And when we feed it and water it and dismiss and reject all those who grow different fruit how can we be surprised in what we sow?

Let be clear. I am not saying dont be angry.  There is much to be angry about.  Evil should always anger us.  But it is what we do that matters.

My prayer:

Dear God….Lord please comfort and support those effected by this terrible tragedy.  Let them know that the deaths of their loved ones, through this evil and capricious act are not in vain because their lives were not in vain.  Each of those lives planted the seeds of love and care, commitment and purpose, and the reality of beauty  in the lives of those they met in their too short lives.  Help us to stand strong against those who reduce us to hatred and violence and let them know they cannot win.  Help us to know that in standing together we find what we really stand for.  Lord help us to know that in our commitment to each other and our refusal to accept hatred and violence as reasonable options for life that we find real strength.  Lord help us to know that we shall overcome and that nothing, nothing or nobody will still us or delay us or slow us in the pursuit of a fair and just life, a better life for all your children.

Amen

The hospital illusion: on the “thoughts” of Patrick Kennedy

June 18, 2015 by

I have been listening and made it through the first hour of the Murphy Hearing and think I will try again later.  Lots to think about… Lots to talk about.

My first impression was that someone has talked to Tim Murphy and told him not to talk so much.  I think the effort was for him to appear kinder and more distinguished. I don’t know about that but quieter was nice.

My major impression though was of Patrick Kennedy.  He was treated as royalty and the anticipatory joy at the next word he might say was so thick you could cut it with a knife.   He hit so many softballs I felt sure he would soon tell them to throw something over hand but he never did.

And in the short time I watched he did more damage than anyone else.  If he does not own stock in a psychiatric hospital someone should give him some.   He way past earned it.

His argument was simple.

1. Mental illness is a brain disorder.   Period… Period.. Period.
2. It is not ethical,  moral and certainly not medically  appropriate to  treat it in any way different than any other medical condition.
3.  When people get really sick they go to the hospital to get the level of care they need and people
with mental illness need to have the same access to medical care that they need and be able to get hospital care.
4.  It is a moral travesty and the rankest form of discrimination that they may not have that access.

There are about a million things wrong with his logic but because of his assumed status as expert on all things mental health his views have real consequences.   They feed into all the heavy breathing about back to the asylum and other such nonsense and serve as apology and justification for people who want to cloak their hurtful, traumatizing and discriminatory ideas and practices in the prettiest ethical clothes they can.   He makes Murphy easier and more palatable.   That is his real danger.

My immediate response to what he had to say was simple.   Psychiatric hospitals are hospitals in name only.   They aren’t really hospitals even if doctors and nurses work there.

Listening to that I think about the lady I know who has been hospitalized 25 times…. in the same hospital.   She was not psychotic and her major presenting symptom was good insurance. She liked her psychiatrist and her psychiatrist taught her that when she felt bad she was getting ready to fall apart. She felt bad a lot. She would be in the hospital 5-7 days max for stabilization and would normally return about every 4-6 months. No one in the hospital thought they were helping her. “Frequent flyer” was the kindest thing they called her. She was admitted not because they thought they would help. She was admitted because they thought they would be paid for her admission.

In this age of evidence based treatment I know of absolutely no data that would lead to anyone concluding that psychiatric hospitalization is anything close to an evidence based practice. There seems little evidence if any that life is better. The only thing admissions predict is that you are likely to be admitted again.

In a hospital everyone is treated differently based on what is wrong. In a psychiatric hospitals everyone is treated the same regardless of what is wrong.

Even people who work in psych hospitals understand the most important thing is not what happens in the hospital but what happens when you leave.

In most states the role of psych hospitals is to stabilize crisis situations and not really to treat anything.

Psychiatric hospitals frequently traumatize their patients. In some hospitals it is frequent and almost inevitable. No medical hospital could survive like that.

In medical hospitals people leave when their complaints are dealt with. In psych hospitals they leave when the insurance pulls the plug.

Services offered in a medical hospital normally can’t be received elsewhere. Services in psychiatric hospitals normally can.

Medication given in a medical hospital is normally effective while the patient is in the hospital. Medication in a psych hospitals normally does not work until weeks after discharge.

People are admitted to medical hospitals voluntarily.

The ship on psychiatric hospitalization has long ago sailed. They are ineffective and cost way too much to serve far too few. They are largely warehouses with cookie cutter programming. The experience of most people hospitalized is coping with chronic boredom and arbitrary authority. It is not a confirmation of their human worth and ability to find their way to a better life but an attack on their dignity and potential as a human being.

I know that Kennedys sermon is irrelevant to Tennessee. The effort in Tennessee is to give people options to hospitalization and if they are hospitalized to make sure they are less likely to be hospitalized again. I have talked about some of those efforts in other posts.

Kennedy is wrong. He ignores the traumas and real injuries in the lives of so many and tells us to blame the brain. At a time when we should be fighting for our rights for more he would crusade for the right for less.

With Kennedy speaking I understand why Murphy was so quiet.


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