Pain medication has helped a little to at least dull the pain. But for the next three days there will be no pain medication.

We have a prescription, but TennCare only allows 5 prescriptions a month and they tell us it cant be filled until the 31st. We have tried every resource, every idea to no avail.

For 3 days we are on our own. The unspeakable is about to become the unimaginable.

I dont understand why. Rage is the only word I can find, but it is far past that. Linda is going to be tortured, not because of the way the system doesnt work, but because of the way it does. It is so, so, so wrong.

If you have time remember us in your prayers. Linda could use some kind words in these incredibly unkind times.

There is much debate and discussion about what the mental health system is and what is should be.  Books by people like Robert Whitaker address the issue of how much the mental health system is part of the solution and how much is it part of the problem.  The answer it seems is probably some of both. 

Recent articles in the New York Times feature prominent psychiatrists vigorously defending themselves from attacks at one point they would have just ignored. And looking the worse for what they have to say. 

 In October Tennessee will have its first peer specialist conference something that not long ago would have seemed a pipe-dream.  More and more people are talking about the idea that the lived experience of people can help others who are going through the same experience.

This post is based is based largely on some ideas talked about in the previous post on the culture of recovery.  It asks a simple question.  What would a comparision between a culture of recovery and a culture based purely on disease management look like?

Look at each of the following pairs as opposite ends of the same spectrum.  What is your experience?

• Ia.-  A recovery based culture believes that individuals matter.  No degree of impairment or difficulty makes them matter less.
• Ib.- A disease management believes that the disease or diagnostic label is the most importatant thing about anybody.
• IIa.- A culture of recovery believes that if an individual is important then what is important to him is important: his thoughts, feelings, goals, aspirations, interests, hopes and dreams.  No amount of impairment or difficulty makes this less true.
• IIb.- A culture of disease managment believes that many things that an individual values are a creation or result of his disease.  It believes that these things do not have as much validity as they do for people without a diagnosis.  It believes the most important thing is symptom management.  What is most important is not that people are people, but that they are “diseased.”
• IIIa- A recovery based culture beliees that if an individual is important then what is most important is what he chooses for himself and not what others choose for him.
• IIIb- A culture of disease management believes that the disease destroys an individuals ability to be able to decide what is best for him and that those choices need to be carefully judged and when necessary made for the individual.
• IVa.- A recovery based culture believes the primary thing the  individual recovers is  control over his own life through the acquistion of knowledge, the development of tools that enables him with the support and encouragement of others to begin building the type of life that enables him to be the best and most version of himself possible.  It believes that recovery involves success in activities, connection with other people, in the contetxt of a life of meaning and purpose.at is important to that individual is important: his thoughts, feelings, goals, aspirations, and interests.  No degree of impairment makes those things matter least.
• IVb.-  The disease management models says that symptom management is the best things can be.  And for the most part it believes that those symptoms will be chronic, always in danger of reoccuring.  It largely believes that medication will be a life time need.
• Va.- Mental health professionals are often essential for recovery, but their appropriate role is as a consultant or coach and not direct supervisor.
• Vb.- Mental health professionals direct and set the direction and tone for recovery.  The question is “medical judgement” and all opinions are not seen as equal or valid.  Ultimate authority is with the doctor.  More than any other question this probably seperates the two approaches.
• VI a.- Recovery assumes that hope is a real thing.  Life can and should be a movement towards better things.  The steps may be slow and require much in the way of patience, but no matter how slow or small they are they are real and should be valued and treasured.
• VIb.  Disease managment believes that hope is limited to symptom management.  It assumes that people will need continual treatment and that life will always tend to be disrupted by the “course of the disease.”  Life never really gets better, the hope is that it get less worse.
• VIIa.-  Recovery assumes that mental illness does not cause you to lose anything essential to being a human being.  Mental illness may block you.  It may disrupt you.  It may damage you.  It may detour you.  It does not diminish what it means for you to be a human being.
• VIIb.-  Disease management believes that the much of what you do, much of what you think, much of  what you feel, and even much of what you believe is either a symptom of your disease or a reaction to a symptom of your disease.
• VIIIa.- Recovery assumes personal responsibility.  It is not something done to you.  It is not something you are given as much as it is something you get.
• VIIIb.- Disease management identifies responsibility as following directions given to you by medical personal.  It is about acce;pting  the responsibility of others.
• IXa.- Recovery assumes that you can develop and maintain relationships with other people.  That you can love and are worthy of being loved.
• IXb.- Disease management believes the capacity for relationship is affected by the “disease.”  You will always have trouble getting along with others and others need to adjust their expectations of you down.
• Xa.- Recovery assumes that you can support and help others, that often, the greatest help you get is in the help you give.
• Xb.- Disease management believes that your capacity to give to others is not as great as people who are not “mentally ill.”  They do not believe you can be near as helpful as a medical person.
• XIa.- Recovery assumes that mental illness does not make a happy life a delusional concept.
• XIb.-  Disease managment cautions against getting your expectations too high.  If you are “mentally ill” you are just not going to get as much as others do.
• XIIa.- Recovery assumes that mental illness (or whatever term you choose to substitute there) is real and the pain and desperation it brings to human life is real and that everyone is entailed to the help they need to regain the life they deserve to have a chance to live.
• XIIb.- Disease managment also believes that pain is real and that everyone deserves help.  It tends to assume though that life is nothing but pain.
• XIIIa.-Recovery assumes that people are biological, social, emotional, cognitive and spiritual beings and recovery to be real and meaningful may have to address each of these dimensions.
• XIIIb.- Disease management believes that in the end the physical, biological aspects are most real and the real source of causation.
• XIVa.- Recovery assumes commitment.  It is not a given, a right or an entitlement.  While very possible it assumes the commitment of those seeking it and their determination to do whatever it takes to achieve it.
• XIvb.- Disease managment assumes that recovery  involves obedience.
• XVa.- Recovery assumes that all of us are more than the names we are called or the labels placed upon us and to reduce us to these names or labels is inherently unfair, wrong and misses the reality of who we are.
• XVb.- Diseae managments believes that diagnostic labels are the best indication of who you really are.
• XVIa.- Recovery assumes that since it is an individual thing and each of us has our own burdens that recovery will vary with each person in speed, distance, and kind.
• XVIb.- Disease managment assumes that recovery is basically the same process for everyone and differences in rate or degree somewhow have to do with people not being as compliant with treatment as they should be.
• XVIIa.-Recovery assumes that while some burdens can be surmounted, others must be lived with and that recovery helps us to learn the difference and develop the skills to do each.
• XVIIb.- Disease managment believes that nothing can be surmounted and everything must be lived with.

After looking at this what do you best believe describes the mental health system as you know it?  What changes have you seen?  What needs to be the focus for further change?

We are now at a crossroads though.  For peer specialists to do more than work in peer support centers we need a professional presence that will  help define the vision and possibilities of what people with lived experience can contribute to the mental health system and to the lives of so many people in such great distress.  An organizational committee has been formed to bring this about.  Our hope is to establish the Tennessee Association of Peer Specialists as a chapter of the National Association of Peer Specialists.  Our hope is to found an organization that goes across the bounds of any one program or one area of the state.  Our goal is to help peer specialists find a seat at the table instead of waiting patiently at the door to be let in.  If you are interested please contact me and I can help you to find a way to become involved.

There is an even more pressing threat right now.  The current budget as suggested would cut spending on peer support.  With the possibility of tenn care cuts for mental health providers the net affect may be deadly to the future of peer support in Tennessee.  Our hope is also that TAPS would also join the many other voices trying to advocate for a more sane spending policy.

We are on the verge of something very important in Tennessee.  If peer support can become an integral part of the mental health delivery system so many will be affected.

Please you in your efforts.  We hope to hear from you soon.

slips screaming

into the night

sleep

a long ago memory

a place far away

hope

seems quiet

and fragile

as a flower

without cover or shelter

close

we cling

knowing that love

endures all

and is not of the moment

but of life

quiet returns

and pain gone

until its next attack

with you

thankful

for your courage

your beauty

your love

I know time is on our side

for hope’s fragility

is of volume

and not substance

In the morning

thankful for a

night defeated

rising to meet

new day

and fresh light

A recent blog post by Pat Deegan told us that the technology now exists for a doctor to tell by his computer based on transmitters placed in the medication when the medication was taken, and the effects on the physical system.  She says that proposals have been made to use this technology in studies of medication for schizophrenics.  How long she wonders (and me too) before the self appointed guardians of the welfare of the mentally ill suggest that this make perfect sense for all the “mentally ill.”

What is the path to such conclusions?  Here is how I think you must think.

1. The mentally ill are fundamentally broken.  Nothing can really change that.
2. Some of their symptoms can be managed by medication.
3. Without management these people are a danger to the people around them and to themselves.
4. Their disease prevents them from understanding what is going on with them or making wise decisions about what to do.  Disagreeing with a recommended course of treatment is an expression of the disease and not a judgement about the value of the recommendation regardless of how much they protest.
5. If they continue to refuse treatment they need to be seperated from the rest of us for their good and our protection until they agree to be “responsible” and take their medication.
6. It is the role of society to take care of these poor people who cant take care of themselves or make good decisions.
7. The proper role of the mental health system is then to coerce people who dont have the ability to make good decisions about their lives to folow the decisions that other people have made for them.   Ultimately it is for their good.
8. Technology should be utilized as possible to make this effort more effective.
9. Maybe if we had a way to put something in their medication to make sure they were taking it that might really help.  After all they have proven that they really dont want to do this.  It reduces the chances of someone lying about taking their medication and getting away with it.

What do you think?  Is this thinking substantially present in the mental health system as you experience it?  If it is what reason is there to expect in time that many people will not argue that we should follow wherever technology leads in our efforts to “help these poor people.”