On revisiting but and and

November 17, 2014 by

The most widely read post ever posted on this blog is the one that talked about the difference between “but” and “and” as foundations of the way you approach life.  And it is not even close.  Almost every day someone reads that post.

Yesterday I did.

It talks a lot about how you deal with the inevitable injustices of life.  Injustice easily becomes quicksand.  You think about it….wonder about….talk about it….and finally you think about little else.  You become convinced that there is little else to think about, little else to be concerned with and you are astounded that others don’t see things as clearly as you.  It is easy to be bitter and hard to be anything else.

It is kind of a weird form of time travel.  Time just stands still.  Regrets empowered in time leave little but regret.  You miss out on what could be and you think what is is still what it has always seemed to be.  Every word, every thought, every experience has an unspoken but loud “but.”

“And” is about empowerment.  Something is wrong, has been wrong or could be wrong and I need to do something about it.  It is about options and alternatives.  It is about faith and hope and commitment. 

It is much easier to sustain the “buts” of life than it is to sustain the “ands.”  “But” quickly acquires momentum. “And” seems to constantly need effort and replenishment.  The important thing to know is that one is not failure and the other success.  They’re both simply human and their interplay has a lot to do with how I live life.

Right now I am struggling.  My sense of the injustice in my life is acute and sharp.  My focus is on remembering that injustice is an opportunity to make things better much of the time, to remember at its best life is frequently hard and unfair, and that their are things you must live with, but living with them does not mean letting them be the only thing that lives in your life.

The biggest loss in life is not in the injustices we all have and must bear, but when those injustices blind us to the blessings we all seek.

Be blessed this day and in those blessings find the seeds to a harvest of better days.

Back

November 17, 2014 by

It has been a while since I have actively posted on Hopeworks Community.  A bunch of things have gotten in the way.  My involvement in health care reform in Tennessee has taken a lot of time and energy.  On a personal level, because of mine and Lindas situation it is overwhelmingly important to me and we have been highly imvolved.  As a mental health advocate I remain convinced it is the most important issue in Tennessee.  Without access to services there is no mental health system.

I have watched the continuing debate about the Murphy Bill and in coming days will have a lot to say about that.  I am grateful for the break and am interested in seeing Murphys next move.

The mental health budget in Tennessee will come out in the next few days and that budget will define many state wide issues.

More than anything though my absence has been about self care.   There has been much distress and trauma as Linda and I deal with our situation.  Without going into detail the plate has not just been full but slopping over the sides.

I look forward in the next days and weeks to resuming actively posting again.

Thanks for many prayers and much support.

National Mental Health Advocacy

November 7, 2014 by

Some perhaps cynical ideas:

National mental health advocacy is rarely effective in the sense that it leads to getting laws passed.  Most organizations are not big enough to make a huge impact on their own.  It requires smaller players working together for a bigger cause which is something that rarely happens since most organizations advocate most for themselves or their particular views.  And people who cant stand each other rarely stand for much in the wider context of things.

This does not mean it is not important to speak on a national level.  It means it is an uphill battle and until we get our affairs in order we are unlikely to affect any wider or larger affairs.

It is important to keep trying because if you fold things up you leave the floor open to whoever makes the most noise and often the noisest people make the least sense.

I wonder if the most effective advocacy is not that done at the local and state level.  At least in Tennessee what happens at that level is far more important than what happens in Washington I think.

I am perhaps very wrong but for several reasons I believe the Murphy Bill has some difficulty about it.

1.  It is a very big ticket item and some of its provisions will require a lot of federal money.  I dont think this will be a big ticket item congress.

2.  I think partisanship will go through the roof and if this comes through as a partisan bill Obama will veto it rather than give the Republicans a victory and they dont have the votes to override a veto.

3.  This bill doesnt address many of the larger issues in the mental health system it says it does and is very susceptible to attack as inadequate to address the issues it highlights.

4.  Murphy rode the front page of the paper.  Ebola, Isis, healthcare reform and half a dozen other issues are going to make the front page harder to come by.

5.  For all these reasons and more it will be essential that this bill get a wide base of support. Dr Torrey has won no awards for compromise.

These are my opinions and they are certainly no more important than anyone elses.  Many events can affect all the points I made.  Advocates may decide that defeating Murphy is more important than scoring points against someone with a different view or from a different organization.  Alternate bills may surface. We may get better in pointing out the problems this bill has and making the point we deserve better.  Or there may be more high profile murders.  Only time will tell.

Perhaps all this is wrong.  Again that is certainly possible.  One thing for sure Murphy is not going away and it is to our advantage that we dont either.

Tenn Care expansion is the biggest mental health issue in Tennessee

November 4, 2014 by

The biggest single mental health advocacy issue in Tennessee right is Tenn Care expansion.  Services and programs mean nothing without access.  Estimates I have seen say that as many as 80000 Tennesseans with mental health challenges lack any kind of access to insurance.  The mental health budget may lose as much as 7%.  Things can only get worse without our action.

It is time to expand Tenn Care.

Rally to “Listen to the People”

Nashville, TN—It’s time to Listen to the People. More than 46,000 concerned supporters have signed Larry and Linda Drain’s petition asking Governor Haslam to accept federal funding to expand Medicaid in our state so that all Tennesseans have access to health care.   Right now, those who can afford insurance and those who qualify for existing TennCare have decent coverage.  But without Medicaid expansion, hundreds of thousands of Tennesseans remain uncovered, in the health care coverage Gap.

On November 10th at 11:00am on Legislative Plaza, Larry and Linda will lead a rally to ask our political leaders to listen to the people.  The Drains and their supporters will deliver over 46,000 signatures to Governor Bill Haslam requesting that he close the health care coverage Gap.

Larry and Linda have gained national attention by sharing their health struggles, their decision to separate in order to get care for Linda, and their frustrations with the healthcare coverage Gap.  The Drains had to give up their marriage to secure access to health care, and even so, only Linda has it.  That’s an outcome that legislators surely did not intend. 

Larry has written a letter to Governor Bill Haslam every day since May, hoping that the Governor will understand the impact that health care coverage gap has on the lives of so many Tennesseans. You can read Larry’s letters on his website at http://deargovernorhaslam.wordpress.com

Governor Haslam has yet to respond.

It is time for our state leaders to listen to the people and hear our plea for Medicaid expansion in Tennessee.

Join us November 10th to hear from Larry and Linda Drain and additional speakers whose lives are directly impacted by this decision.

###

November 10

November 4, 2014 by

For Immediate Release
November 4, 2014
Contact: Larry Drain
Email: hopeworkscommunity@gmail.com

Rally to “Listen to the People”

Nashville, TN—It’s time to Listen to the People. More than 46,000 concerned supporters have signed Larry and Linda Drain’s petition asking Governor Haslam to accept federal funding to expand Medicaid in our state so that all Tennesseans have access to health care.   Right now, those who can afford insurance and those who qualify for existing TennCare have decent coverage.  But without Medicaid expansion, hundreds of thousands of Tennesseans remain uncovered, in the health care coverage Gap.

On November 10th at 11:00am on Legislative Plaza, Larry and Linda will lead a rally to ask our political leaders to listen to the people.  The Drains and their supporters will deliver over 46,000 signatures to Governor Bill Haslam requesting that he close the health care coverage Gap.

Larry and Linda have gained national attention by sharing their health struggles, their decision to separate in order to get care for Linda, and their frustrations with the healthcare coverage Gap.  The Drains had to give up their marriage to secure access to health care, and even so, only Linda has it.  That’s an outcome that legislators surely did not intend.  

Larry has written a letter to Governor Bill Haslam every day since May, hoping that the Governor will understand the impact that health care coverage gap has on the lives of so many Tennesseans. You can read Larry’s letters on his website at http://deargovernorhaslam.wordpress.com

Governor Haslam has yet to respond. 

It is time for our state leaders to listen to the people and hear our plea for Medicaid expansion in Tennessee. 

Join us November 10th to hear from Larry and Linda Drain and additional speakers whose lives are directly impacted by this decision.

###

Mental Health Activists Create Civil Rights Campaign to Identify Like-Minded Congressional Candidates — WASHINGTON, Oct. 28, 2014 /PRNewswire-USNewswire/ –

October 29, 2014 by

Mental Health Activists Create Civil Rights Campaign to Identify Like-Minded Congressional Candidates — WASHINGTON, Oct. 28, 2014 /PRNewswire-USNewswire/ –
http://www.prnewswire.com/news-releases/mental-health-activists-create-civil-rights-campaign-to-identify-like-minded-congressional-candidates-280698812.html
【from Next Browser】

November 10..LISTEN TO THE PEOPLE

October 28, 2014 by

http://wp.me/p4E9xY-aB

On the core beliefs of a humane mental health system

October 24, 2014 by

hopeworkscommunity:

From the archives

Originally posted on Hopeworks Community:

from the archives

Is it possible for the mental health system to be humane????  Many would answer no.  Some might say it already is.  What core beliefs would characterize such a system if it could exist.  Below is my attempt at an answer.  When I look at the posts on this blog I am astonished at how many posts speak directly to one or more of these “core beliefs.”

  • A mental health diagnosis is not a real thing.  It is not the fundamental reality of the person diagnosed.  It is a name for a group of behaviors, experiences, and beliefs that compares that person to other people with similar experiences, behaviors and beliefs.  It is either a useful comparison in which case it helps to create a plan to help that person or a misleading and useless comparison that fundamentally leads to actions that are either useless or even harmful.  No matter…

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What if recovery is more than mental health

October 24, 2014 by

hopeworkscommunity:

From the archives

Originally posted on Hopeworks Community:

Treatment as I understand the term is really about some notion of mental health.  Recently I have become convinced that recovery is about much more than mental health.

Recovery as I have said in recent posts is, I believe, about moving towards a better life.  The issues associated with mental health are certainly a core part of finding a better life.  But they are not the same thing.  Neither are the problems that get in the way of a better life simply a derivative of mental health concerns.  We make a mistake I think when we give the mental health system carte blanche ownership of the notion of recovery.

I met a lady this past week who is severely depressed.  There would be something wrong if she wasnt. 

She has lived in a car for the past year.  She was thrown out of a horribly abusive home by parents who…

View original 345 more words

An everyday definition of recovery

October 24, 2014 by

hopeworkscommunity:

From thq archives

Originally posted on Hopeworks Community:

This is a repost of an earlier post on the definition of recovery. It relates very directly to points made in more recent posts. It tries to talk about recovery in real life terms and not psychological jargon. I very much believe that recovery is a everyday thing that struggling people already know about and the key is what we do with each other and not what an “expert” does to us.

An everyday definition of recovery

There are a million definitions of recovery.  Some of them I even understand.  Here is my attempt at a simple minded definition:

Recovery is moving towards a better life.

It is not a destination.  It is not a thing you have.  It is not something you achieve.  It is a journey, “a moving towards.”

It does not mean that everything must be good.  It means that overall things are part of the process…

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What do you advocate for: the importance of shared concerns

October 21, 2014 by

Advocacy starts with concerns and effective advocacy starts with shared concerns.  Many groups that I have been part of talk about the importance of action but too often they spend more time sniping at each other than they do actually doing anything.  To some degree this seems to be changing but there is a long way to go.

Part of the problem I wonder is that maybe we get the cart before the horse.  Effective advocacy is not so much a function of the brilliance of the solutions we propose as it is our commitment to the concerns we share.  If we have no common concerns that grab us at the gut level the likelihood is that we will have little common cause.  If our shared concerns do not move us to action the likelihood is that we will not act.

I think there are many important concerns.  Murphy’s concerns are inadequate.  There is far more going on than his 4% he is always talking about.  Coercion is not the most important issue.  If you have something that works you normally dont have to force people to buy it.

The post below talks about my concerns.  It was written some time ago but as we struggle to move forward in action seems relevant.  You may share some of these concerns.  Others you may not.  You may have some not on this list.

What we are for depends on what we care about.  I applaud the many people who seem committed to finding shared concerns and common action and getting past the chronic squabbling that has left us immobilized.

In a preceding post I talked about an essential, suprisingly often forgotten, step in advocacy. Before anyone can respond to what you ask you must be clear about what you are asking.  If people are not sure what you are selling they probably arent buying.

I also talked about the importance of being for something.  It is a lot easier to convince someone not to buy something if you give them a better alternative.

I have listened to a lot of ideas about change.  Some seem very important and very doable. Some dont seem relevant to current reality.  They just arent going to happen.  No one other than a small group is for them and it is unclear if hopes for legislative support are even realistic.  Some dont seem like they are very true. They are not what they are advertised to be. Some seem important. Some seem not so important.

The questions below are adapted from a previous post. They are one way, certainly not the only and probably not the best way to look at proposed mental health reform. How much would a proposal actually change things? Does it address important problems? Does it address what you want addressed? Does it leave important questions unaddressed?

What does the proposal have to do with:

The issue of access to services. There is no help if you cant get it. Lack of access is a major issue for many many people. Health care reform and adequate funding for mental health services are both essential.

The issue of effective services. Many things we do dont work very well. Some things may even do more harm than good. We do too much because that is what we are used to doing or because someone has a vested interest in continuing to see it done.

The issue of making sure those who seek help are treated with dignity and respect. For too many the most difficult thing is not the issues they deal with but the system they turn to for help. Those who help you should not be a source of trauma in your life.

The issue of making sure that people have access to correct information to enable them to make decisions about their own lives. The mental health system should be accurate and honest.

The issue of supporting people in making those decisions. Empowering people to be in charge of their lives.

The issue of enabling people to acquire the skills and tools that really make a difference in their lives. Learning makes a difference and the mental health system should make possible learning that makes a differerence.

Addressing issues of homelessness, joblessness, and poverty that are so often part of what it means to  be labeled with a mental illness in this country.

Addressing the dismal state of health care that so many people with mental health diagnosis receive. It is a crime and disgrace that people with psychiatric diagnosis die much earlier than those without. Everyone with a diagnosis knows what it is like to be treated like real medical issues are “in their head.”

Addressing the very real issues of discrimination and prejudice that is a core element in the life of everyone who has a mental health diagnosis.

Addressing the benefits, risks and side effects of medication. Making sure that choices about medication are informed choices.

Addressing the national disgrace of the treatment of those with mental health issues in the jails and prisons of this country.

Addressing the national calamity of suicide.

Addressing the growing issue of trauma.  Moving mental health from a whats wrong system to a what happened system.

Addressing the issue of peer support. It is clear and overwhelming that the voice of lived experience matters. What role should it play in an optimal system?

There are many more issues to be considered, Some issues translate easily into proposed legislation. Some may not translate at all and other advocacy may be called for. The important thing is to know what you are asking, ask something worth asking and have a plan how to effectively get the answer you want.

What I learned from the fight for peer support centers

October 20, 2014 by

hopeworkscommunity:

Peer support Centers may well be on the chopping block again with the new budget. This post was written last year when we found out peer support funding had been restored.

Originally posted on Hopeworks Community:

It really sounds kind of strange to say we won, because in a very real way we all won.  Vulnerable people who depended on a service, a service that for most of them, had given them their best chance for a better life can still depend on that service.  And for once the system made the decision to not hurt people.  They refused to believe this was the only way, the only choice they had.  They listened and they changed.  The governor of Tennessee is a businessman who talks a lot about “good customer service.”  They decided to give “good customer service.”  The essence of good customer service is to know you are there for the customer and not vice versa.  Today customer service won in Tennessee.

I learned a lot about small voices.  This was not a campaign of big voices or big organizations.  This was one of ordinary…

View original 269 more words

The 4% that isn’t 4%. Jaffe on what he is really for….

October 19, 2014 by

A mental health advocate reported an interesting conversation to me he had with DJ Jaffe. 

According to the advocate he was trying to talk to Jaffe about the value of peer support and the recovery model.  Jaffe reportedly cut the conversation short.

(And this is paraphrasing from what I was told) “I am not interested in any of that.  I am only interested in the 4% that don’t know they are sick….”

He said more than that, but that short statement leads to a bunch of different reactions:

What about the 96%?  The problem with the mental health system is way past 4% of anything.  Too many people lack access to services (again Murphy is against health care reform), too many of the services offered are not very effective,  and the system as a whole stigmatizes the people who use it and that is barely scratching the surface.

What about the 334,000 mentally ill people in jail?  Are they part of the 4%?  How do they know?  Is there some type of proof past their assertions?  Does anyone really believe that for 334,000 people that criminal behavior was the result of a deficiency of AOT time or psychiatric hospitalization?  Is anyone really that simple minded?

What about truth in advertising?  The “4% and only the 4%” doesn’t really sound much like the deliverance of the mental health system the Murphy Bill promises.  They are building a 7-11 and calling it a shopping mall. And it isn’t even much of a convenience store.

How do they know the 4% is 4%?  There are 6.5 million people in Tennessee. About 350,000 receive mental health services. A little over 21000 are in prison. 4% of 6.5 million is 260,000 people. Where are they????? By definition they are not in the mental health system. They don’t know they have a problem. They are not filling the jails. They are not filling the psychiatric hospitals (Tennessee has about 12000 committals a year and some of those are repeats). Where are they? How can 260,000 thousand people with severe mental illness go undetected?? Severe mental illness should have severe life impacting symptoms that can not be hidden. Losing 260,000 thousand people would be like the 5th or 6th largest city in Tennessee disappearing. Where did they go?

The answer is that the 4% was never there to begin with. That number is one of the most unchallenged pieces of mythology in all of Torrey land. Do the math for your state. You will find a lot of people missing that Torrey and Jaffe assure you are there.

AOT is strongest in New York. They serve 2000 people..
1/3 is 1%. And it is one heck of a large assumption to even believe all of those 2000 are anosognosic.

If you look at closely what is Jaffe really for… not much for very many.

Let your legislator know today what you are for.

Truth and honesty

October 12, 2014 by

There are those who believe that mental illness is a pernicious, life killing force that has destroyed innumerable lives and affects our society in horrible ways.  They think it is utterly essential for people to get help and if in the process some rights are treated as less that important that is an acceptable trade off. Many believe that the “mentally ill” are very poor at realizing or accepting they need help and that coercion is an inevitable part of an effective mental health system.

There are those believe that the mental health system is a pernicious, life killing system that has destroyed innumerable lives and affects our society in horrible ways. They think it is best that people not get involved in it and the long term cost negates any short term gain. They believe that professionals are very poor at helping people and either don’t realize or don’t care that they often harm the people they are trying to help.

One side says the most important thing is the “mental illness”. The other side says the most important thing is what it means to have a “mental illness”, how it affects the way others treat them and how,in the end, they treat and define themselves.

One side says it is about medical issues and getting people to be good patients. The other side says it is about human issues, and how well we care for those that need help.

And there is another larger side that says it is not either/or. They think some measure of both sides make the most sense. They are suspicious of anyone’s claim to the truth. They believe helping people in serious distress and treating them with dignity and respect are not contradictory things. They believe it is more important to have an honest passionate stake in what works, in what helps, than anything else. They believe it is too easy to get wound up in defending your position and lose focus on what helps particularly when it doesn’t jive with your position.

Most of the people I know are somewhere in the middle. They know first hand the impact that mental health issues have had in their lives. They know about trauma and hurt. They also know about discrimination and prejudice. They have had varying experiences in the mental health system. Some feel it has saved their lives. Some feel like it hurt and some feel like it hurt badly.

They think a mental health system that helps people that need and want help with services that help is important. They think we just haven’t kept our promises. Mental health budgets have been cut past the bone and that to talk about mental health reform without even mentioning that is a peculiar blindness. Even those who advocate great changes recognize that penny poor systems seldom make any changes.

They think that labels do not explain people. Calling many different things one thing does not make it one thing. And they believe a system that claims to know so much about “mental illness” seems at times to know very little about people. They think the claims that people like Rep Murphy makes that the experience of coercion has no lasting effect on people is simply nonsense. They have been there. They know.

One lady said it best, “Every time I hear someone tell me they know the truth about mental health…Mental illness…Mental anything….I think they are either simple minded or just heavily invested in their own ego. I wish we could find a way to stop worrying so much about truth and pursue honesty a little more passionately. The most helpful thing my psychiatrist ever did was to tell me that he didn’t know when he didn’t know. People who are always arguing about the truth want to win more than they want anything. We need more people who want to help more than anything.”

I heard Robert Whitaker talk once about the possibility of an honest mental health system. I have others talk about not protecting turf or status. I have heard others talk about ideology masquerading as ideas.

I confess I like the idea of a system that goes past competing claims of truth and towards a common commitment to honesty and real care. Makes real sense to me.

Peer support and hope

October 12, 2014 by

This post was written last year.  There is more than a little possibility that funding for peer support centers will be  proposed to be cut.  That decision will be made in the next few weeks.  Sometimes we dont know what we have until we lose it.

Peer support has helped them to find a real, impactful and central place for hope in their lives.  Too often peer support is dismissed as “treatment only less.”  And not too often is it seen as something different that is just as essential as any treatment in the recovery of people who seek help for mental health issues.  It gives people who will not do better without a sense of hope, a hope they never found in their experience of the “ordinary mental health system.”  In seeing other people who have been there and made it, other people who are making it, and other people who are struggling as hard as they are but not giving up the lesson is clear– IT DOESNT HAVE TO ALWAYS BE THIS BAD.  IT CAN GET BETTER.  I CAN DO IT AND IT IS WORTH DOING.  Without this faith treatment, even the best and most skilled treatment is stillborn.  And it is peer support centers, peer driven services, and support networks of all kinds that people find it.

Peer support is for many  people the missing piece of a puzzle that sometimes seems to be more of a problem than a solution.  I know of so many people who tell me that mental health services were so insufficient, so disappointing, so discouraging for them.  The message that they got, sometimes in ways spoken, sometimes in ways unspoken was that it was not going to get better.  Everywhere they looked the only message was failure.  One guy told me, “My therapist was a smart man.  He told me a lot of stuff that he thought would help.  But I always felt like he didnt really think it would help me.  He was as discouraged in his way as I was in mine.  Day after day he was talking to people with little real sense of hope and he never could figure out to sell people on hope.  He really meant well, but I was just one of the crowd.  It wasnt until I walked into a peer support center that I really realized it wasnt just talk.  Things could get better and they could get better for me.”

I have come to believe that peer driven services dont compete with treatment.  They complete it.  And person after person is telling me the same thing.  The mental health system has a problem.  So many people in it just dont buy in.  It is not because they dont believe they have a problem.  Misery has a way of letting you know it is there.  It is not because they dont think they need help.  Talk to anyone who has lived with the desperation of life coming apart at the seams.  It is because they dont see any solution, just one more source of deprivation and disappointment.

Peer support centers in Tennessee dont begin to serve everyone in need and they are not likely to do that.  In the short run they save lives and restore hope.  In the long run perhaps they can be new yeast in a system that badly needs hope and a way to look at things that reaches out to everyone.


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