Independent Living Specialists - It's Time We Made the Shift

There are two basic definitions of peer support:

#1. People with lived experience support each other to achieve self-determined lives of their choosing.
#2. People with lived experience support providers to sell their products and increase market share.

(I'm rather fond of the urban slang for #2:  'Thugs who don’t give a shit use folks who don’t know shit to sell bad shit without paying shit.')

By all appearances, definition #2 is winning.  MHA has just unveiled its design for National Peer Specialist Certification. It effectively guts any hope of the kind of natural human relationship that used to be common practice under definition #1. S. Davidow. The Downfall of Peer Support: MHA & National Certification, https://www.madinamerica.com/2017/04/downfall-peer-support-mha-national-certification/   At the same time, we're seeing the downfall of SAMHA, and the rise of national legislation to limit peer roles.

Where the F* is the ADA?

First an aside.  Why isn't anyone challenging this crap on ADA grounds?  Peer workers are a professional group with our own values, expertise and ethical considerations.  Every other professional group creates its own code of ethics and is self-supervising.  Can you imagine how psychiatry would respond if Congress tried to pass a law appointing SAMHSA or the National Department of Health and Human Services to supervise psychiatrists?  Nor would MHA presume to define the professional future of modern psychiatry - essentially making rules about psychiatrists without psychiatrists - as they did to dislabeled peer specialists.

Suffice it to say, psychiatry would go apoplectic if some outside body appointed itself to govern their own.  Can you imagine Mad in America or the Foundation for Excellence in Mental Healthcare presuming to decide how the members of the psychiatric profession should be trained, what their ethics should be and who should supervise whether they are meeting the standards?  Just as important, outsiders don't do that for psychologists, nurses, or counselors either.  All of these professions have their own bodies who develop their own ethical standards and methods for self-regulation.  That is the nature of a profession.

Peer support came about because these professions were failing us.  Peer support succeeded, where existing professions hadn't, because we had our own expertise and our own way.  That valuable, independent expertise is how we got our market share in the first place. Yet, the U.S. government and a national non-profit funded for our benefit have no compunction about substituting their judgment for ours about what is best for our profession and how we should use our own expertise with our own people.

The assumption that dislabeled people can't function independently or ethically manage our own affairs is discriminatory on its face.  No less disturbing, the limitations imposed go to the heart of our civil and human rights to self determination, independent voice, and employment on our own terms. These are exactly the kind of things the ADA, the Bill of Rights and the Equal Protection clause were enacted to stop.

This is exactly where our lawyers and funded advocacy organization can step in and help us entirely change the conversation.  They can help us to know exactly what we need to do to lay the factual foundation we need to shift the paradigm. 

Here are the basic facts we need to establish:

1. As a peer community, we are capable of supporting institutionalized others to live 'safely' in freedom.
2. The government is willing to pay for safety. (This is a no-brainer.  The authorities basically admit this fact when the institutionalize someone).

That's basically all there is to it.  Once we can demonstrate our capacity to safely provide for our own, existing funding is Constitutionally required to be rerouted to us.  This is because the federal law preferences community living over institutional living.  This gives institutionalized people a legal right to chose independent living and the peer services and community resources that make this possible over institutional living and the institution-related services operated and offered by mental health providers.

 

Here's an example of what this could look like in practical terms: 

• Instead of paying $300,000 a year to warehouse one of our people, we could reroute that same money to community housing and peer support.  
• Thus, 9 individual trained in peer support could get together with one institutionalized person.  
• We could buy a $200,000 house where all 10 could live.  
• We could all work about 20 hours per week helping our friend to live safely and well in freedom.  
• In the first year, everyone in the house could have $10,000 to live on for food and expenses. 
• After year one (with the house paid off and our friend permanently housed), there's $30,000 / year to equitably divide among us in return for around the clock care and support for as long as the legal system determines that our friend needs that level of assistance.

In other words, the 2 biggest needs of our community - meaningful jobs and housing - could be met entirely with funding that's now going to medical model warehousing.  Now, that's advocacy! 

And we could be on our way there right now.  We simply need the advocacy organization who represent us to set that kind of litigation strategy up as a priority and help us to map out the factual steps in the process that will be needed to meet the legal requirements for making our case. 

Are you ready to learn how...?

Moving on to Independent Living 

Here's the basic theory based on Olmstead v. LC (Lois Curtis) and EW (Elaine Wilson):

1. Funding streams exist for 'independent living'

Increasingly, there are funding streams that are coming available under, not just under the medical/ healthcare system, but also under the Olmstead/Curtis right to the community. Olmstead/Curtis can be reasonably interpreted as recognizing people's right to as much community as possible while still balancing pressing public safety concerns.  With baby boomers getting older and a huge number of kids who are growing up in the psych system, there is increasing pressure for de-institutionalization, expanding community living supports, as well as healthcare costs containment.  I don't know the exact facts on this, but I've heard from sources who follow this that some states are getting federal grants to do this Olmstead/Curtis kind of work and are charging between $100,00 and $300,000 per person per year to move someone from an institutional setting to the community.

In addition, many states (e.g. Vermont, California) have also started independent living funding streams that assist dislabeled people to stay in the community.  As a result, dislabeled people are now hiring their own home companions who have no formal qualifications.  I currently hold one of these jobs, so I know they exist.

People with lived experience can and should be doing this kind of work. The basic requirement is the ability to assist someone to achieve a self-determined life of their choosing.  That is what peer support (definition #1) is all about.

Moreover, the need really is there - both in the public and private sectors.  Training for personal care assistances (PCAs) is largely geared toward assisting people with physical disabilities. So many PCA know next to nothing about psychosocial dislabilities.  In addition, many PCAs and the organizations they work for are scared by the publicity around 'mental illness' and won't take these kinds of jobs.

Our Technical Assistance Centers and peer-run organizations should be all over these kinds of opportunities.  Tons of us have been trained in peer modalities only to be told that no jobs existed. This kind of training (which many of us have no outlet for using) is ideal for assisting those dislabeled by psychiatry who want to stay in the community.

Our peer non-profits and TA Centers therefore should be assisting our people to access, connect with, and expand these service opportunities.  They should be helping create local networks of peers who want to offer and receive these kinds of services.  They should be supporting peers to set up and publicize their own business models to address and serve existing market needs. They should be actively lobbying for more and more independent living funding as a win-win for all involved.  They should have their constituents out lobbying for this kind of funding as well.

Specifically, this is a way to:

1. Support dislabeled people to live freely and well in the natural settings of their choosing
2. Reduce the likelihood of law enforcement or 911 involvement
3. Increase everyone's safety
4. Save on expensive inpatient/ professional healthcare
5. Create meaningful employment for people with lived experience; and
6. Expand care choices and access

2. Funding Independent Living vs. Institutional Living

We can and should compete with traditional funding streams for Olmstead/ Curtis work.  We also should be identifying people who are currently institutionalized, hospitalized, stuck in ERs or unhappy in provider housing.  We should establish relationships and ascertain their needs and goals.  Once the relationship is sufficiently solid and mutually trusting, with their blessing, we should make the case for the following:

• The person has a constitutional right to choose life in the community under O’Connor v. Donaldson, 422 U.S. 563 (1975).  Less well-known than Olmstead/ Curtis, Donaldson is probably the single most important decision in mental health law.  Under Donaldson: 

“A state cannot constitutionally confine without more a nondangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends.”

• Once a solid, working relationship is established, the case can be made that the person can survive 'safely' in the community with our help.
• The state therefore should pay for independent living supports (peer support, housing, food, transport, etc.) instead of institutional living or provider housing to the extent the person wants out because: 

1. This kind of liberty/ community is a constitutional right
2. The state has already demonstrated that it is willing to pay for the person to be safe
3. Independent living services are just as feasible and cost-effective (which is all that Olmstead/ Curtis requires) as institutional living or provider housing
4. It would be violate the person's right to liberty for the State to say it was willing to pay for safety only in a custodial setting but not in the community if both are comparable in cost and ability to achieve legitimate state objectives.

3. Funding Natural Relationship vs. Provider Relationship

Arguably, even the peer relationships we form with people in institutional settings or provider housing should be compensable under the above theory.  This same theory also should get us access to these settings - along with the right to offer our services behind closed doors to those who want them.

Here is the basic argument:

• Independent peer support is not the same as provider-provided peer support.  The latter usually has to follow medical ethics rather than the ethics of natural community relationships. Accordingly, the latter simply does not have the same feel to it, as anyone who has ever seen a therapist or case manager can tell you.
• Peers who come from the community have independent expertise that is different from what the provider is offering. The provider only knows how to keep people safe in treatment settings. In contrast, peers (independent living specialists) actually know, from lived experience how to:
• obtain freedom from institutional and provider settings and 
• survive safely in the community as a person who has been psychiatrically dislabeled
• Many people who do not respond to medical relationships do respond to peer relationships. Consumer-Operated Services:The Evidence. HHS Pub. No. SMA-11-4633, Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services, 2011,
  https://store.samhsa.gov/shin/content/SMA11-4633CD-DVD/TheEvidence-COSP.pdf
• Peer relationships have far more of a community feel than medical ones
• Having a non-institutional peer relationship may be the closest thing to a natural community relationship that an institutionalized dislabeled person may ever get.
• Peer services are reasonably available and cost effective
• Peer services can be provided at comparable safety levels to that of other kinds of visitors the institution or provider allows.
• People in professional treatment settings therefore have a right to the contact with persons with lived experience, and the independent living expertise that we offer.
• They also have the right to have independent peer services paid for as:

1. A reasonable accommodation for accessing some semblance of 'community' if they live in a segregated treatment setting.
2. A cost-effective, user-friendly alternative to conventional services.
3. A legitimate choice and necessary counter-balance given the clear psychological harm of treatment settings where social contacts are limited to other treatment-dependent dislabeled people; as a result, those in segregated settings rarely see or work with dislabeled people who are living free and doing well in the community. 
4. A matter of customer preference and non-discrimination by public and private insurers given the data that many people do better with independent peer support than they do in provider-run models.    Consumer-Operated Services:The Evidence, supra,
   https://store.samhsa.gov/shin/content/SMA11-4633CD-DVD/TheEvidence-COSP.pdf
5. A matter of affirmative action given the systematic provider exclusion of independent peer voice, values and wisdom from conventional treatment settings.
6. To ensure the cultural competency of the services offered, given widespread discrimination against 'mental illness' and the clear challenges faced by those who have to navigate conventional culture as dislabeled persons.

4. Independent Living vs. Healthcare Expertise

 It is important to understand that the relevant expertise needed to effect Olmstead/ Curtis rights is entirely different than that for medical services. Here are some reasons:

As Natural as Support Gets

Under Olmstead/ Curtis, participation in the community is a fundamental right that competes with medical and public safety needs.  The people who are most capable of bringing a 'community feel' to services - as well as helping service users to access as much community as they can consistent with public policy considerations - are not doctors, nurses or clinical experts.  Rather, rather they are other dislabeled people (peers) who have

1. Been in traditional services and managed to free themselves
2. Succeeded in their efforts to survive and thrive in the face of challenges that lead to systemic entrenchment for many dislabeled people. 

In social science terms this kind of expertise is well-accepted.  It is known as "positive deviance."

• L. Drain,  On success and the importance of positive deviance, https://hopeworkscommunity.wordpress.com/2017/04/22/on-success-and-the-importance-of-positive-deviance-2/;  
• Positive Deviance,  https://en.wikipedia.org/wiki/Positive_deviance#References.

Thus, peers are uniquely qualified to provide support for Olmstead/ Curtis rights.  In its original unfunded form, this is what peer support was all about. See, e.g.,

• Judi Chamberlin, On Our Own, http://www.power2u.org/mm5/merchant.mvc?Screen=PROD&Store_Code=NEC&Product_Code=Book-OnOurOwn&Category_Code=books; 
• S. Zinman, H. Harp, S. Budd, Reaching Across,  https://books.google.com/books/about/Reaching_across.html?id=dnFHAAAAMAAJ; 
• Alcoholic Anonymous, http://www.aa.org/pages/en_US/read-the-big-book-and-twelve-steps-and-twelve-traditions 

Independence is an Expertise

Peer support is effective largely because we are not healthcare providers.  Rather, we are people from the community who are actually dealing with these issues.  Thus, independent living is an expertise in its own right. It addresses an entirely different human needs and values than healthcare.  The needs involved include the sense of worth that comes from experiencing full citizenship and community living. The core values include participation, belonging and freedom to access supports and resources of one's choosing.  These needs and values, essentially liberty and democracy, are far more fundamental to American history and law than the right to healthcare.

Indeed, the focus of the healthcare profession is entirely different.  The primary consideration for healthcare professionals is not customer choice, liberty, freedom or preference.  The main concerns are health (including physical safety) and liability.  Any 'care' provided is first subjected to these risk management considerations.  Thus, due to liability concerns, it is often more convenient for providers to thwart independence than encourage it.

To see the practical difference this makes and how much it constrains choice and liberty, here is just one example:

In the Vermont State Hospital, a patient was forcibly restrained for trying to stand on a chair.  It was considered unsafe, inappropriate behavior.  She could fall and that might lead to a lawsuit. In the community, people use chairs to improve their reach or vantage point all the time.  Rarely does anyone question it - or fall. 

Institutional Conflict of Interest

The independent living know-how offered by peers is something the medical/ healthcare profession is ill-suited to limit, direct or supervise.    In the first place, there is often a direct conflict of interest between the institutional services and independent living. Both financial and liability concerns dictate that providers will error on the side of caution.  So long as insurance is in place, it is usually safer and more profitable for providers to to keep someone in custody rather than release them.

Provider's aren't qualified to speak about independence

The goal of lots of people is to live on their own without provider intervention.  The people who manage to do that have to find a way to live without continued provider involvement.  By definition, the provider system has little contact with these people and knows very little about how they manage to stay independent once the person and the treatment system part ways.  Providers also have little comprehension of what it takes - even while people are under their 'care' - to live well, feel well and be well in a natural environment as a dislabeled person.  In fact, the mental health rules of ethics basically prevent providers from participating in our lives in any form of natural way. So how on earth can they claim to know what we are doing or how we are doing it in our successful attempts to free ourselves from their 'care'?

In other words, we have every right to establish ourselves as an independent self-supervising, reimbursement-worthy, professional discipline.  Our expertise is necessary and valuable in and of itself.  We are not merely an arm or instrument of existing healthcare services.  We serve communities, families and dislabeled persons in important ways that conventional healthcare, by its own design, cannot.

Chapter 5-4: De-Coding the Messages of High Stakes Reactivity

[Formerly titled: Do You Want to Save Your Ass or Your Face...?]

In contemporary society, we've learned to treat High-Stakes Reactivity like an unsightly embarrassment.  It's usually the elephant in the living room that someone is trying to hide under the rug.

It is time to rethink that.  Nature isn't stupid. High-Stakes reactivity is about our survival.  Our well-being - and sometimes our lives - are literally at stake.  Accordingly, we have every reason to believe that evolution has made this system both

1. critically informative, and 
2. highly reliable (if you know what you're looking for).

In truth, the High-Stakes system is the most critical, reliable carrier of important information we have as human beings.  It tells us things we absolutely need to know about ourselves, each other, our surroundings and what is happening in them.

Yes, it's inconvenient in a lot of social contexts.  But the High-Stakes system doesn't bullshit around.  It doesn't wait it's turn.  It isn't particularly focused on keeping up appearances.  It's there to save your ass not your face.

Once we understand those basic principles, we can begin to look at High-Stakes reactivity in a new light.  This was revolutionary for me.   It was here that I began to see myself through new eyes - and to realize how much there was to learn.

What High-Stakes Reactivity Is Trying to Tell Us

It has taken a lot of time and patient observation to understand what my own High-Stakes reactivity was telling me.  Here are are some of the things I've discovered along the way.

1. What I really care about  

The High-Stakes system tells me what I care about.   If I don't care, then High-Stakes doesn't even register.  It's only when things matter, really matter, that High-Stakes gets involved.  The things that get High-Stakes going are the stuff I care about the most.

In other words, the High-Stakes system tells us who we are.  It is the key to understanding our core needs, values and motivations as human beings.  So, if you want to know who you are, who you want to be, and even get clues to your purpose on this earth, then pay attention to your High-Stakes reactions.

All of this got a lot clearer to me once I began to ask myself questions like this:

• What kinds of stuff is High-Stakes to me...?
• What do I chase after the most or run from the fastest...?
• Why do I do that...?
• What are the major needs and values that seem to direct my behavior...?
• Why do these things matter to me...?
• Do I like the choices I am making...?
• How do these choices make me feel about myself...?
• If I feel conflicted, what needs and values see to be at odds with each other...?
• What does it say about me that I care...?

For example, let's take a look at the stuff that unsettles me the most.  As a kid, I was always concerned with fairness.  My family saw me as a bean-counter  - and kept asking if I needed 'a pound of flesh.'  But that was my way of trying to address social dynamics I didn't understand.  In essence, I was trying to say:   

Hey everybody - I don't feel all that connected here.  Whatever is happening between the rest of you isn't really happening for me.  I don't understand why, and I sure as heck don't know what to do about it. The best I've come up with so far to get that across is just to count beans.

The result was that everyone thought I loved splitting hairs about who was right or wrong or got more than their share.  They teased me endlessly for arguing seemingly trivial points.  In reality, I hated that role.  The issues I was trying to express were, for me, so much bigger than that.  I wanted to connect. I put a lot of effort into trying to connect.  But, at the same time, the stuff that spelled connection for others didn't really do it for me.  I hated the dinner time small talk where we all took turns sharing about school activities and play dates.  It seemed boring and unimportant.  I wanted to know what life was about and what was really happening in the world.

Little did I know, but those kinds of conversations were just not going to happen.  My mom had grown up with way too many hard knocks from the school of real life.  She was born the year the stock market crashed.  Even so, her family managed relatively well until her dad was called up for World War II.  He died only a year later, at which point her known universe changed on a dime at the ripe old age of 12.  After that, it was elbow grease, ingenuity and meticulous frugality that made survival possible.

To her credit, my mom did everything in her power to protect us from the devastation she had grown up with.  With Mary Poppins-like elegance, newspapers closed themselves, TVs turned off and conversations sweetened like spoonfuls of sugar.  Day in and day out, we woke to up to sunshine or light songs about it. Each night, she tucked us in to crisp white sheets and read us to sleep from Caldecott picture books.  In between, she planned three well-balanced meals a day and a steady diet of educational activities designed to enrich young minds.

Looking back on it now, it's easy to see - and admire - how hard she worked to give us happy childhoods. The problem for me was that my heart was somewhere else.

I remember being riveted in second grade by a civil rights story called  'Three Who Dared.'   Ever since that time, I've wondered whether I too could find the courage of my convictions.  Would I be brave enough to lay down my life like so many others have in social justice movements throughout history...?

This was High-Stakes activation of a different kind.  I literally felt pulled by my whole  being into these issues.  That explains a lot why, in my family, I felt like an outsider.  The things that engaged me the most were off limits for discussion.

Years later, some of the emptiness I felt started to emerge.   I began eating and purging thousands of calories daily.  Everyone was worried, and  I got sent to psychotherapy.  The mental health system's approach was to try to pathologize either me or my family - often both.  Yet, there is nothing, at core, wrong with either way of being.  The central conflict was about different values and different ways of being.  What gives my life purpose, and what give my mother purpose, are very different.

It's good to know that now.  It might have helped us all a lot to know that then.  Of course, we felt at odds with each other!  Of course, we were always tipping each other over! We were putting each other in High Stakes just by being who we were.  The social justice involvement I craved reminded my mother of the political unrest of her childhood and spelled, for her, instability and disaster.  On the other hand, I would have rather poked pins in my eyes than live the Better Homes and Gardens floor plans that made my mother feel like she had arrived.

It took a long time to make sense of these issues and understand what they were telling me.  Sad to say, despite thousands of hours of therapy - and spending hundreds of thousands in today's dollars - the mental health system wasn't that helpful. As with today, the focus was mostly on how I could become more normal.  Could I learn to eat the right amount of food, do the right amount of exercise, enjoy small talk in the right small bites at the right social gatherings?

It is hardly surprising that that approach didn't help.  I was already getting 'normal on steriods' from my home environment.  My passion was for the big ideas and the big issues - and there wasn't very much of that happening in the circles I was steered to travel.  For a time, the mental health system made it even worse by characterizing these interests as too dangerously 'grandiose' for the likes of a 'manic' like me.

Suffice it to say, it took a long time to recognize and own that big ideas and big issues are the stuff of life for me.  I have to engage them or my zest for living dies. As with anything one cares deeply about, the question is not whether but how.   The key to discovering this for me has been to follow the reactivity. In the end, questions like those above help me figure out not only what my personal 'big ticket' items are, but also how they harmonize with other needs and values that are also High-Stakes for me.

2.  How much I care

Usually we are taught to write off or ignore extreme behaviors.  The conventional wisdom is that that is how you get them to go away.  That strategy may work but it is missing the point.

The High-Stakes system is a wake up call. The louder the alarm, the more it matters.   Extreme energy and extreme behaviors are the High-Stakes system's way of communicating that something really important is up.

It may look crazy, but that is how High-Stakes gets my attention.  High-Stakes is very effective this way.    The bigger the energy, the badder the behavior, the harder it is to disregard.   So High-Stakes just keeps amping up the volume until I notice.

I have to say this can be extremely irritating and inconvenient.  There are a lot of times I've felt like my High-Stakes system was just a spoiled brat.  Oh, here we go, another temper tantrum.  Give me a break.  Why should I care...?

But, with time, I've learned to respect the High-Stakes method.  If the High-Stakes system just made little pathetic whimpers it would be easy to ignore.  I would brush it off and go on with my day.

It is a mistake to see the High-Stakes system as solely focused on life and death.  Some of the most important information I get has to do with who I am as a human being.  It's about the values that motivate my existence - the purpose some part of me believes is important to live out on this earth.  When these things are threatened, the danger isn't lessened just because I don't get it.

So, the High-Stakes system is taking no chances. When something is really High-Stakes, this system is determined to get my attention.  It will stop at practically nothing to get it.  It creates high drama to insure I will notice.   It goes for the jugular of what I care about. Crazy, novel, and shamefully outrageous are all are perfect for this effect.

3. What I'm really good at

I'll say it again:  The High-Stakes system is about our survival, and it isn't stupid.  So, the last thing the High-Stakes system is going to do when it really matters in put in the B-Team.

That stands to reason right...?  Imagine you're facing the challenge or opportunity of a life time.  How many of our ancestors would have survived if their bodies or brains had said:   

Wow, a [tiger/ cute girl].  I've never played the flute before, but I've always wanted to.  I wonder if I could make one with this stick in front of me and then play it and maybe the [tiger/cute girl] would like the music and do what I want as a result...  

 No No No.  That's the stuff of All-Is-Well. All-Is-Well is where we experiment and try new stuff and see if we like it and how it works.

High Stakes is totally different. It is about the tried and true.  It calls on our known strengths and assets - the stuff that feels most familiar and comes most naturally..  Thus, we turn to what we are best at (natural gifts, aptitudes, expertise) when we're under the gun and the stakes are high.

So, if you want to know what you're really good at, ask yourself this:

• What do I say or do when the stakes are high?
• What comes most naturally for me?
• What are my go-to strategies? 

Here are some of the 'old faithfuls' for me in High-Stakes: 

• Intensity
• Energy
• Believing in my own knowing
• Endurance, persistence
• Sensitivity to fairness/unfairness
• Vision of social justice and collective action
• Loving the excitement and challenge of daring big
• Longing for spirituality and transcendence
• Fierce determination to make my dreams real
• Ability to concentrate energy, sustain focus and go without sleep
• Big voice, loudness, holding my ground
• Sheer volume of effort and activity
• Food works for me - supplies energy and comfort
• Alcohol works for me - supplies stress relief, comfort and courage

When I made this list for myself, I had another realization.  If wonder if the following experience is similar or different for you...?  When I look at the list, it is easy to see why the medical model labels me Bipolar.  Either the so-called 'symptoms' - or the stuff that gives rise to them - are pretty much cataloged there.

It's also easy to see get why bipolar drugs have felt so limiting for me.  The very things that the medical model defines as 'illness' are also the source of my greatest gifts.  They're at the heart of what I value most about myself as a human being.

So, yes, I admit these things can get extreme and scary when the stakes are high.  Yet, so many times in my life these same things have been assets.  For example, as a kid, I wasn't a great reader.  I also wasn't naturally athletic.  Without the attributes listed above my life would have been totally different.  But because they were there, a lot of doors opened. The personal qualities listed above made me an A student and got me a closet full of sports medals.  They facilitated some great college and career opportunities.  They are helping me show up to write this guide, when other voices tell me it is hopeless and no one will care.

In other words, the very features that the medical model is trying to eradicate in me are what, in my life experience, have made the good stuff possible.  They are what I know best, do best, and have the most experience with.  They give me the best chance possible against the odds in those High-Stakes moments when I need them the most.

4. What it's not safe to say

A lot of High-Stakes stuff cannot be directly spoken.

Say you're head over heals attracted to the stranger across the room.  You don't walk over there and say that.  For most of us, it would be too high a risk, as well as too much too soon.

So what happens? Your eyes and posture start to talk for you.  You keep looking that way.  You groom your hair.  Essentially you act out the message, 'I want your attention.  Pay attention to me'  instead of saying it.

What you're doing is obvious if the other person cares to see.  But without the words actually being said, the intentions remain deniable enough for both parties to save face.  This is your High-Stakes system both protecting you and communicating for you when actual words don't work.

Here's another example.  

Suppose you're attending a community meeting. A member of one demographic says something insulting about the members of another demographic (e.g., race, sex, gender, religion, income, etc.).  Feelings run high on both sides.  Neither the insult nor the correcting of the insult are considered socially safe to voice.

So, High-Stakes does it for us.  Several people jerk awake.  Bodies tighten, faces frown.  You can prick the silence with a pin.

At that point, almost everyone knows something just happened. Some people may not know what offended, but almost everyone will note the missing beat.  Maybe someone will call it out directly. Maybe no one will.  But from that point on, nearly everyone is on guard. Either they're getting ready to defend against more of the same, or they're trying to figure out how to keep alliances and still correct the social wrong.

Almost always, after the meeting, people will get together with allies and process what happened. Did you hear what so and so said?  Yeah, can you believe it?  Should we say anything to Mike?  I bet James was really hurt.  

So, if you want to know what the social norms are - if you want to know what can and can't be voiced - pay attention to High-Stakes reactivity.  It tells you a lot about the culture we live in.  There is a tremendous amount that is not safe to say.  There is a tremendous amount - really important stuff - that we are not allowed to talk openly about with each other.

No less frightening, those of us who say what is socially unspeakable usually get labeled.  We are considered childish, intellectually disabled, 'on the spectrum', impulsive, oppositional, inappropriate...  In other words, the ability to hide, obscure, or ignore troubling social dynamics is considered a sign of 'good judgment' and 'mental health'. But honestly voicing the true nature of what is occurring is considered immature or a 'symptom' of 'disorder.'

A third example

The above examples are fairly common.  But High-Stakes can get pretty coded and idiosyncratic. There was a time when I was afraid to leave my apartment.  I kept having flashes in my mind of doing something horrible.  I could see myself yelling profanities in church. I could see my hand touching someone's butt as I walked past them on the street.  I worried I would abuse kids.  It occurred to me, repeatedly, that I could murder loved ones while they slept.

I talked about this a lot in therapy.  Ultimately the thoughts were framed as a weird variation of OCD (Obsessive-Compulsive Disorder). I was told to take my meds and ignore them.  But I couldn't.  They tortured me for a really long time.

Then, finally, I started to do my own thinking.  I asked myself stuff like:

1. Do you really want to act on these thoughts?  Well, I 'm not sure.  I don't feel that much of a pull, but why else would the thoughts be happening?
2. Ok, but what about the stuff you really do want to act on?  How do the thoughts compare, for example, to wanting Ben & Jerry's Ice Cream, or when there's someone you'd like to go on a date with?  Not even close.  The thoughts barely even register.  But still, why are they here?
3. Ok, what else could they mean?  How do you feel about having these thoughts?  I feel horrible. Like the only thing I want to do is have a life, but I can't because I'm afraid I might hurt people.
4. Okay, so you care about having a life.  And you care about not hurting people. Yes...
5. So what's the problem?  Well, it's possible I could hurt people.  I mean if I wanted to, I could probably do these things.  I have the power to actually carry this really bad stuff out if I choose to do so.
6. But you don't want to.   True, but I could do it if I wanted to.
7. Oh, so this is about risk and responsibility. Like you have power and you're afraid of abusing it. I guess so.
8. Do you want to abuse the power you have?  Not really, but sometimes I have a lot of energy and I get carried away.  I think I know what's best for people or I think everyone wants the same thing I want. I feel horrible about myself when I overstep in those ways, but then I get carried away and I do it again.
9. So you don't want to abuse your power, but you know you have the potential to 'bulldoze' others if you get carried away or you're not paying attention? Yes.  
10. So how are you going to deal with that?  Well, I guess these thoughts are kind of a mindfulness bell.  They tell me my energy is too high, and that I need to be cautious or I might hurt someone. 
11. So the thoughts are actually helping to keep you and others safe? Huh.  I never thought of that. I guess they're letting me know I need to back off, look around, be more careful about where my energy is going and how fast. 
12. Kind of cool, huh.  Yeah, for sure.  
13. Who knew.  Yeah, who knew.

The thoughts haven't troubled me that much since I had this little chat with myself.  It was a difficult conversation and contained some painful truths.  I don't like the fact that my intensity and energy tends to overwhelm others.  I also don't like the idea that I can get oblivious to the personhood of others and hurt our relationship.  At the same time, it has been a relief to recognize how much some part of me cares about becoming more aware.  And it feels great to know that part of me will work really hard to get my attention - and do what is needed to 'shock' me back to awareness.

5. What must be grasped rather than fixed

The High-Stakes system speaks a lot in metaphors.  The last conversation was one example.  But why does High-Stakes do this?

My best guess is that this is intentional. The reality is that a lot of stuff in life can't be addressed directly or resolved literally.  Choices are made.  Opportunities are gained or lost.  Some losses are necessary.  You leave home, graduate from school, get a promotion, find a new interest that requires leaving something else behind....  Other losses are unambiguously painful.  We lose capacities and don't get them back.  People die, move away, relationships change.

The above stuff is really important - so High-Stakes has to get involved.  But, at the same time, almost none of this stuff can be fixed literally by fight, flight or freeze.  The challenge is existential rather than something material that you can physically subdue. There is no direct way to repair the damage or recover the losses.  The only hope is to use symbols or make meaning.

Enter metaphor.  The 'fuzzy' stuff of life is what metaphor is made for.  By speaking in metaphor, High-Stakes is effectively saying two things:

1. This is bigger than you.  It is not something you can fix in a literal, concrete way.
2. If you are going to cope with this, you will need to find some new ways of measuring and making meaning.  See if you can figure out what I'm trying to tell you.  If you can do that, you'll be well on your way to developing the intangible savvy that you need to make it through stuff like this.

In other words, the High-Stakes system is helping us to develop the capacities we need endure losses that can't be fixed.  This, in turn, aids our survival.  We get better and better at turning hard times to good use.  We learn to make meaning from our difficulties.  We find reasons to go on that are bigger than ourselves.  We learn how to connect - through imagination and empathy - to the very fabric of life itself.  

To read more of this guide: 

Not Broken Biology: Getting Beyond the Disease Model Paradigm of 'Mental Illness' http://peerlyhuman.blogspot.com/2017/03/not-broken-biology-getting-beyond.html

Chapter 1-3: Aren't You Just Quibbling with Language?

Well, yes and no...

Yes, language is where we are going to start.

No, language is not where we will end.

Yes, this is about small shifts in wording that nearly everyone can make.

No, this is not a quibble.  For some of us, it may even be the difference between life and death.


The best illustration I've come across on the power of language  in mental heath is Shery Mead's Intentional Peer Support: An Alternative Approach, http://www.intentionalpeersupport.org/wp-content/uploads/2014/12/IPS-An-Alternative-Approach-2014-First-Chapter.pdf.  Developed in the 1990s, this classic text is a consciousness-raising workbook for the consumer, survivor, ex-patient movement.  It is the mental health equivalent of Our Bodies, Ourselves in the women's movement.  It contains a lot worth understanding - not just for those of us who are living the experience, but also for professionals, families and allies.

To demonstrate the importance of language - I'll basically just do the exercises in Shery's work.  It's kind of amazing how far these simple practices can take us - and how quickly and effectively they show us what is at stake with the subjects at issue in this guide.

Two Stories

Story #1. The story the mental health system and conventional society tells about me:

Sarah is a 55-year old woman on Social Security Disability for Bipolar I Disorder.  Her life is an example of the tragic progression of mental illness.

In retrospect, Sarah had always been mentally fragile.  She demonstrated poor impulse control and emotional dysregulation beginning in childhood.  There were recurrent emotional outbursts at home and school. Her mother reports that Sarah had difficulty making and keeping friends and that the family had to 'walk on tiptoes around Sarah's moods.'

In her teens, Sarah developed an eating disorder.  She became obsessed with body image, compulsively exercised, and binged and purged large quantities of food several times a day.  This behavior continued into college, and ultimately led to Sarah's loss of a prestigious appointment as a cadet at the United States Air Force Academy.  As a cadet, Sarah entered her first psychiatric hospitalization, before being medically discharged for Obsessive Compulsive Personality Disorder.

Despite her emotional difficulties, Sarah did well academically.  She was a straight A student and valedictorian of her high school class.  She graduated law school cum laude, and had a promising career ahead of her.  She obtained a coveted clerkship with a judge on the United States Court of Appeals, and then obtained employment as an appellate attorney with the Justice Department in Washington, DC.

But a few years later, mental illness struck again.  Sarah had a psychotic break and had to be hospitalized.  In her delusional state, Sarah maintained that she was 'Jesus Christ in the Second Coming'. With the aid of anti-psychotics, Sarah was able to return to her work at the Justice Department under clinical supervision.

A few years later, against clinical advice, Sarah decided to make a career change and pursue graduate studies in Pastoral Counseling. Sarah did well academically, but completed her clinical internships only with difficulty.  There were serious conflicts with supervisory staff at two out of three settings.

Sarah worked for several years as a licensed therapist for Catholic Charities, but conflicts with supervisors and poor professional boundaries with clients led to further breakdown.  During one episode, Sarah dissociated so severely that the family pet died while unattended in a car on a hot summer day.

Eventually, a new medication regimen and psychotherapy enabled Sarah to return to work under close clinical supervision. However, Sarah experienced considerable difficulty performing her job responsibilities in a timely manner.  This caused further difficulties and tensions at work.

Ultimately, Sarah decided to seek less stressful employment. She obtained a position as the Director of a local Wellness and Recovery Center run by a peer mental health group. Sarah related well to the clients, but had difficulties managing paperwork.  Conflicts with the the Board of Directors led to Sarah's resignation after little more than a year.

After that, Sarah's functioning continued to deteriorate.  She was unable to maintain steady employment, even as a peer support worker.  Over a period of 6 years, Sarah was hired for positions with 6 different peer organizations in three different states.  Yet, conflicts with supervisors and co-workers abounded.  None of these jobs lasted more than 6 months.

In 2015, Sarah was awarded Social Security Disability on the recommendation of her psychiatrist of 15 years.  She currently sees a psychiatric, a therapist and takes her medication regularly.  This has helped her stability immensely.  She now uses peer support as a wellness tool and finds it helps her very much.


Story #2: The story I tell for myself

I have a great life! Yes, it is true that my existence doesn't amount to much by conventional definitions.  I will probably never work again in a professional role.  I would not last long as a Walmart greeter.  I can't pick vegetables fast enough for Monsanto.  I will screw up the registers at the local supermarket or Bank of America.  My computer skills don't qualify me as a secretary, much less for a corporate role at Microsoft and HP.

It is equally true that, yes, my life path has been pretty messy.  There have been a lot of things to make sense of that no one seemed to understand.  I didn't find many reliable guides in this culture. That was pretty frustrating, and I did a lot of lashing out at people who didn't deserve it and were only trying to help.  I wish I had known how to do it differently at the time.

That being said, I've come to believe that my own process has some value.  The most important thing has always been to find and follow my own truth.  I've worked really hard to understand what's been going on for me, and to make sense of my experience as a human being on this planet.  Admittedly, I've made a lot of mistakes.  Some of those have been appalling - unbearably painful - for others as well as myself.  

On the other hand, I think I've learned some things along the way that are worth knowing. That includes the really awful stuff which, ironically I now find is the most useful.  At the very least, it gives me some empathy for others who are going through similar struggles.  But it gets even sweeter than this.  I can be a lot more honest now.  So, instead of just helping each other 'get over it', we often stumble our way into sharing our deep concerns, fears and regrets.  More often than not, we end up finding out (surprise!) that we're not the only ones.  This helps to ease the pain - and sometimes even point a way forward - for both of us.

These understandings - really just basic tenets of human rights and peer support - not only seem to work for me. They help me connect in ways that conventional treatment still doesn't 'get.'  It also reinforces my belief in the value and wisdom of every one of us.  This includes the value and wisdom of other so-called 'chronics' and 'treatment failures' like me.

I find it really screwed up that the conventional world remains so keen to manage and contain us. They think that this is essential in order to keep healthcare costs down.

I actually find that the opposite is true.  The fact is I need conversations that matter like my body needs vegetables.  The white bread diet of conventional small talk just doesn't do it for me.  I suspect it is starving the social fabric of our entire culture.

In actuality, there are boatloads of wisdom and riches in the feelings, thoughts and actions that the dominant culture sees as 'mentally ill.'  We are, in essence, the canaries in the gold mine of modern society.  We're intuitive, sensitive, and tuning in.  We are listening with our hearts and minds wide open to the emotional and relational tenor of what is happening around us in the modern world.

What we are picking up on is unsettling to say the least - and at times outright terrifying.
A lot of us are aware, on a gut level, that something is happening in the space between human beings that is drastically wrong. It's killing us - our families, our workplaces, our communities, our planet. We sense this because we are connected with our truth in ways that others have learned to disregard.

Just as important, however, the messages we are getting are totally confusing.  They are at odds with what we are being told by trusted others - family, friends, neighbors, teachers, employers, civic leaders, the media - you name it.

The choice we are up against - all too often - is claiming the truth of our knowing versus social acceptance and fitting in.   The disease model - and the huge weight of authority behind it - gives us a way out.  Instead of learning how to recognize our truth and do the difficult work we are being called upon to do, we can write off our dis-ease to bad biology.

I know this myself.  I did it for years.  What a relief!  I remember saying to myself.  How much easier, safer, more sociable to cede my responsibility and conscience to expert knowledge and the majority will...

The truth be told, if I could have made it work for me, I probably would still be there. But I couldn't. I was getting worse and worse instead of better and better with the best the medical model had to offer. At some point it became apparent, if I wanted a chance to have a life, a different journey had to begin.

For those out there who still feel pretty lost, believe me I get it.  I've been there - overwhelmed, alone and totally baffled. Wanting to jump out of my skin with no end in sight and praying to die.  Quite possibly, I'll be there again someday.  I hope not because it's hell on earth and I wouldn't wish it on anyone.

At the same time, I find some hope and some comfort in how things seem to be turning out:

The most important stuff in my life now is not happening is because I succeeded at conventional treatment.  It is happening because I failed miserably at it, and I had to find another way.  

Perhaps in the end, you, like me, will conclude that these struggles we are having are not about our faults or failings.  All of us have faults and failings.  We wouldn't be human otherwise.

The question is whether  the disease model and the disease way of thinking is the most useful way of understanding source of our difficulties and what to do about them.  It may be for some, but it isn't for me.

I doubt that I am alone in this.  My conversations with others suggest that a lot of us have our eggs in more than one basket.  Depending on our situation, we might pay considerable lip service to medical approaches - aggressive interventions, treatment compliance, medication monitoring, yada yada.  But, the longing for a better way is not particularly unique.

 So...

• If you're looking for a path forward with integrity and heart...  
• If you would like a path where you get to keep your truth and live your highest values... 
• If you would like a way to tell others to get off your back, stop policing your reality, and do their own work as human beings...

Then come along for the ride, because that's where we're trying to go!

To read more of this guide: 

Not Broken Biology: Getting Beyond the Disease Model Paradigm of 'Mental Illness'  
http://peerlyhuman.blogspot.com/2017/03/not-broken-biology-getting-beyond.html

Chapter 5-3: Putting the 'Experts' in their Place

The implications of the Survival Reactivity approach to mental well-being are revolutionary.  In this chapter we talk about why.

Here is what we have learned already in the previous chapters of this guide

1. Much of what passes for 'mental illness' is actually High-Stakes reactivity
2. High-Stakes reactivity often feels bad, but it is actually our friend. 
3. The point of the High-Stakes system is to help us discover and address the real life needs and concerns that are bothering us. It wants us to feel safer and be more secure in the world. 
4. The key to turning off the High-Stakes system is to find solutions that restore our sense that "All-Is-Well" in our relevant world. 

 (See Part IV, and Chapters 5-1 and 5-2),

What does this mean?

It means we now have a clear picture of what is creating 'mental illness'  It's not an illness at all! It's a normal reaction to high-stakes situations.

Better yet, we also have a clear understanding of what to do about it.  Our 'symptoms are not really symptoms at all.  They are warning signs, alerting us to potential dangers in our lives.  All they want is for us to be safe.  So, to get them to leave us alone is not that big a deal.   We just need to figure out:

1. What are the real life concerns that are stressing us out or gearing us up? Part III of this guide can help with that.
2. How to get back to feeling like 'All-Is-Well'?  This can be achieved, in both the short and long-run, either by fixing the problem or learning to cope with the discomfort. For ideas on this, see Chapter 5-2, and also the chapters that follow this one.

It's that simple.

Implication #1: The age of "expert interpretation" as the first response to human distress is over

For a long time, we thought mental health was really complicated, - far too complicated for the average person to grasp.  As a result, people had to go to 'experts' with the most important questions of their lives.

The Survival Reactivity theory changes that. It gives ordinary people a way to make sense of what is going on with them.  It puts the power to understand and interpret our own lives back in our own hands.

Very simply, we are the most important source of information about us.

1. Our bodies are reliable reporters as to the fact of our distress and how big a deal it is to us.  
2. Our minds are reliable reporters as to what it is that we actually are concerned about.

The take home message:

If we want to maximize mental health and well-being, we shouldn't start with all the complicated genetic, chemical or psychological theories.   Those things might be helpful or enriching at some point.  But to get started, first and foremost, we need to listen to ourselves.  We also need to listen to each other.  Equally important, we need to address the real life concerns that are bothering us as human beings.

Here is why:

High-stakes reactivity is driving the extremes that are scaring us or others. As the concerns that bother us are addressed or coped with, our High-Stakes reactivity ('symptoms') will ease and lessen. As we experience less and less High-Stakes reactivity - and become more able to understand and work with it - the fears that we and others have around it ('the mental illness') will lessen as well. This, in turn, will result in more and more resources being available - better sleep, nutrition, energy - for healing our bodies and brains.  As we heal and get stronger, we will have more and more resources available to address and remedy the high mental and physical price ('trauma') that we, our families and our communities have been paying for business as usual (social dynamics of power and privilege) in the modern world.

Implication #2:  We must put Medical Model in its proper place 

As part of listening to ourselves and each other, we need to seriously reconsider the role of common conventional treatments - like  drugs and electroshock.  Such approaches often add - rather than reduce - the stress on already burdened bodies and minds.  No less important, these strategies often have serious effects.  They can be toxic, even deadly, to some people.  Not surprisingly, this heightens, instead of lessens, High-Stakes reactivity in many people.

Additionally, both drugs and shock carry another risk.  Electro-shock - and many psychoactive drugs - reduce our capacity to stay clear-headed and figure out what is going on with us. They can wipe out the clues we need in order to understand ourselves.  They can obscure or even block awareness of the real sources of distress that are driving the High-Stakes system.  This is especially true when combined with pre-existing High-Stakes activation, which, as discussed before (Chapters 4-4 and 4-5), takes its own toll on mental functioning

A good analogy is like having your hand on a burning stove.  High-Stakes reactivity is designed to pick that up, figure out where the threat is coming from, and get you to move your hand.  In the case of burning flesh, it happens in an instant.

But High-Stakes reactivity resulting from a lifetime of social stressors - poverty, abuse, discrimination - can be much more subtle.  When we complain to our doctors about this kind of pain, only rarely does the medical system help us identify or escape these damaging - often deadly - social threats.  Rather, the standard response of our doctors is to give us pills.  These pills (often sedatives or tranquilizers) shut down the Survival Response.  As a result, many of us no longer care that we are in danger.  We can no longer feel the warnings our bodies are trying to give us.  Nor can we detect the damage that is continuing to be done to us.

In other words, the medical model approach is the equivalent of killing the signals that are telling us our flesh is burning.  Instead, they write of our real concerns as 'mental illness' and leave our hands burning on the stove!!

 Given that approach, it is hardly surprising that those of us with 'severe mental illness' end up dying  - on average - 15-25 years before the rest of the population.  Yes, you heard me right: that's 15-25 years on average.  In other words, it is not just that some of us with the big name mental labels will die 15-25 years before everyone else.  It's that every single one of us loses on average 15-25 years off our lifespan in our present day system dominated by medical model approaches. McLaren, N., Mainstream Western Psychiatry: Science or Non-science?, https://www.madinamerica.com/2017/03/mainstream-western-psychiatry-science-or-non-science/)

Usually the medical model blames that on us. They claim we would do better if only we took all the pills they gave us. (Not true! The longevity studies suggest that we actually do worse. See, e.g., Whitaker, R., Norway Orders Drug-Free Treatment in Psychiatry,  https://www.madinamerica.com/2017/03/the-door-to-a-revolution-in-psychiatry-cracks-open/)

Or, they say we aren't doing enough to take care of our health after they give us the pills.  (This overlooks the fact that the pills actually dope us up, disrupt digestion, and cause rapid weight gain - all of which interfere with our ability to take care of ourselves. See, e.g., McLaren, N., supra.

Far more close to the truth of the matter is this:  We are living in circumstances that, in actuality, are dangerous to human health and well being. We know this is true. The World Health Organization tells us how important the social determinants of health are to human health and well being.  The National Council on Behavioral Healthcare tells us that some 90 percent (90!) of behavioral health populations grow up with trauma, violence and neglect of basic needs. See Chapter 2-2: Social Determinants of Behavioral Health, http://peerlyhuman.blogspot.com/2017/03/chapter-2-social-determinants-of.html.

Yet, medical approaches do little - if anything -  to help us address these harsh realities of our lives. On the contrary, the main 'treatments' we are offered are designed to dull and disable the very biological warning systems that tell us something is wrong!  In other words, our bodies doing their best to wake us up to the fact that our lives are at risk.  At the same time, the medical model is doing everything in its power to shut them up.

When you understand this, the life-shortening effect of medical model treatment is no longer a mystery.  The treatment, quite literally, is killing us.

The Proper Place of the Medical Model

Please do not mistake what I am saying here.  I am not against psychoactive drugs.  Many people have been helped by them, and there clearly is a role for them.  Some people also report being helped by electro-shock and psychosurgery.  So, possibly there is even a role for those things too.

At the same time, we need to think very carefully about why, when and how these powerful, potentially deadly, interventions are used, if ever.  Do they help mitigate harmful effects of the survival response.  If so, why. Specifically, we need to think about:

1. Do they help mitigate harmful effects of the Survival Response?  If so when, why, how and for whom? 
2. Are such interventions the only tool -short or long term - that  a person can use to restore their sense of safety and turning off the High-Stakes system? If not, why aren't other options - e.g., massage, unconditional positive regard, childcare, a weekend stay at a spa - being offered.  Certainly these things are comparably priced, and far less aversive to the standard emergency room/ psych ward stay.  
3. When, where and why (if ever) would someone find medical model interventions the most effective, best-suited short or long-term strategy for damping down their High-Stakes reactivity and returning their body to All-Is-Well?  Again, it comes down to choice, transparency and customer preference.  Rarely if ever are meaningful, cost-comparable choices being offered in this in the medical model monopoly of our modern times.
4. If a person is deemed a danger to self or others, how likely is it that medical model approaches will actually reduce their Survival reactivity? What would be the response of the average person in a state of fear or heightened concern, if we removed them from their lives and force drugs, restraint or shock on them?  When if ever would we predict that such unilateral actions would increase a person's sense of well-being and safety and help them return them to All-Is-Well?  Given the high probability that people already in trauma will be further traumatized by such forcible domination when if ever is it worth the risk?  What is more, should such approaches ever be considered the first intervention of choice - as they all too often are in our current hospital system.  Equally important, if force is not the answer, then what is...? 

These are important questions that deserve an answer.  We will address them in detail in future chapters.

A Brief Word about Medications

Do your homework. Don't stop them abruptly.  These are powerful substances.  They really do alter our mental and physical functioning - some times irreversibly.  At a minimum, their effects can be long-lasting effects and extremely entrenched.  As life-diminishing as many of them are, it is wise to respect that.  

I say this because it has been my own journey.  Like some who may be reading this, I felt empowered when I first got information about alternatives to the medical model. I subsequently decided to taper off a medication I had been on for 10 years.  I went too fast.  It didn't go well.  

As a result, I still take a small dose of this medication.  Not because I think it has made my life better on the whole.  Not because I think it was 'the answer' to what I was going through at the time I started it.  But rather, because, after a decade (now 2 decades), the way my brain and body function are no longer the same.  In other words, taking this medication is 'harm reduction' for me.  It protects me from the damage that, I believe, the medication itself caused.  I'll say more about why I think that is in a later chapter.  

For now, my advice to you is to proceed slowly, gather information, evaluate results.  A great place to start is the Harm Reduction Guide to Coming Off Psychiatric Drugs, http://www.willhall.net/files/ComingOffPsychDrugsHarmReductGuide2Edonline.pdf.  

It will walk you through the considerations and help you learn the ins and outs.

Please also note that a lot of people think they have to find a willing provider to help them taper.  The research doesn't bear this out.  Don't get me wrong, a willing, knowledgeable provider is worth their weight in gold. Sadly, however, on average, they still aren't widely available.  As a result, the success rates historically have been about the same whether people taper with the blessing of a physician or taper on their own.  Harm Reduction Guide, supra, p. 28

Chapter 5-2. Turning Off High-Stakes Reactivity

The beautiful thing about the High-Stakes System is that there is a simple effective way to turn it off.

Think about it.  High stakes is turned on when things feel insecure:

1. We're either feeling threatened by something - so we gear up to protect against the threat; or
2. We're afraid we'll lose an important opportunity- so we gear up to protect against the loss.

For example, suppose you have a big project due at school or work.   High Stakes might keep you up all night thinking about it, even when you really want to sleep.

Or suppose a police officer approaches you as you're walking down the street. High Stakes might make you so activated that you can hardly resist running away even though you know you should do your best to appear cooperative and calm.

In other words, the main thing that keeps the High-Stakes system turned on is the perception that something high-stakes is going on around us.  As long as we feel uncertain, insecure or on edge, the High-Stakes system will keep us activated, on guard, and ready to roll.

At the same time, High-Stakes activation is hard on our brains and our bodies. Vital organs and tissues can't get what they need to maintain their functioning and repair the wear and tear of every day living. So, generally speaking, our bodies and brains want us to get back to All-Is-Well.  But, before that can happen they need you to feel safe.  It would be dangerous if High-Stakes turned off - and let you sleep for example - if your village was about to be attacked by the Huns.

On the other hand, the moment the threat goes away - and you feel safe in the world again - High Stakes reactivity is no longer needed.  You know this when it happens.  The Huns are defeated - or you find out it was only fireworks in the distance.  Subjectively, in your heart of hearts, you breath a sigh of relief, shake it off, and begin to return to All-Is-Well.  It might not happen the instant the threat is objectively over.  You might still worry and mentally prepare for a Hun attack for quite some time.  You might turn in your school paper or work project and then start fretting about your grade or review. Or, you might feel outraged for a while after the fact that the police stopped you for just walking down the street in your own town.  But, eventually, as the threat gets further and further away, and you begin to feel relatively certain that you're going to be okay, High-Stakes shuts down, and All-Is-Well returns.

Here is the point:

Our brains and bodies are our allies here.  They want the High-Stakes system to turn off.

An Exception to the Rule

Right now some of you are probably thinking:  That's not true for me!  I love the High-Stakes system.  I'd spend all my time there if I could.  That's how I get things done.

Yes, the activation and excitement of the High-Stakes system sometimes feels good.  There are the hormones (like adrenalin and natural morphine-like pain-killers) that we produce in activated states.  A lot of us become dependant on these High-Stakes mechanisms to feel ok.

In the long run, however, this 'addiction' to High-Stakes activation is problematic.  It is in direct conflict with the natural inclination of our bodies and brains. They tend to prefer the All-Is-Well state, and are usually trying pretty hard to get us back there.  This is so they can rest, repair and process the effects of negotiating life on life's terms. In a nutshell, it is the All-Is-Well state of mind and body that enables us not only to restore capacity, but also to learn and grow from the lived experiences that we have.

Knowledge is Power

Let's state the rule again:  Our brains and bodies are our allies.  They want the High-Stakes system to turn off.

Now that you know this, you have some power.  There is all kinds of reactivity you can turn off on your own.  The way to turn it off is find a way to make your world feel more secure.  Once the high-stakes system is satisfied that 'All-Is-Well', it shuts down.  There's no more need for the intense activation.  So High-Stakes lets go of the reins.  The moment that happens, routine functioning begins to resume and healing and restoration can begin.

In other words, the key to addressing High-Stakes responses, is:

1.  Figure out what is driving the system: What turned High Stakes on? What is the underlying need?
2. Find a way to make yourself feel more safe and secure - short or long-term.   Address the problem, fix it.  Make it go away if at all possible. 
3. Find a way to cope.  Life is full of discomforts we can't make go away.  When that is the case, the trick is to figure out how to tolerate, manage or accept the stuff you can't change or control in the moment. 

It's that simple.

That being said, here's a few words to the wise. The process we are talking about is really straight-forward.  Learning to use it, and continuing to practice it, however, is actually pretty challenging. Especially when your first starting out.

So, here are a few tips:

1. If you think you might be in High-Stakes reactivity, but you're having trouble figuring out why, take a look at Part III of this guide. Part III is full of reasons why all of us almost anyone might feel insecure.   It not only speaks to the 90% of us who have had it rough from the start.  It also suggests why even those of us who have done well in modern society and have all the advantages anyone could hope for might still feel like the Stakes are High.  As an added bonus, Part III has lots of reflection questions that you can ask yourself.  These will help you figure out if your High Stakes activation is about stuff that is happening now, or, if like many of us, you have past experiences - sometimes decades old - that are still keeping you locked in High-Stakes reactivity today.  
2.  Despite its reputation in pop psychology, the High-Stakes system is not your enemy.  And, it certainly is not the out-dated 'lizard brain' that some 'trauma-informed' neurological approaches have made it out to be. To the contrary, the High Stakes system is your ally in protecting you. The point of the High-Stakes system is to discover and address the real life needs and concerns that are bothering you.  It wants you to actually feel safer and more secure in your world. It therefore insists on solutions that feel trustworthy to you.  That is the point of the High-Stakes system. 
3. The key to restoring your sense of safety (and thereby turning High Stakes off) is to focus on your subjective (felt) experience:  Do you feel safer or not?  The point is not to look around and try to intellectually convince yourself that you are safe because you can't see any threat.  If you still feel threatened, then something threatening still needs to be addressed. We will talk about this more in the following chapters. But for now, recognize that we are not asking you to bull-shit or brain-wash yourself. We also don't care whether others feel you are safe or secure enough. The High-Stakes system doesn't work that way.  It is accountable to you and you alone.

With that in mind, it is worth saying a word or two more about the art of coping.  Many of us have gotten dug in pretty deep.  There are ingrained patterns and life circumstances that may take a long time to remedy and heal.  In this situation, it is really important to find strategies that create as much of the "All-Is-Well"experience as possible for you right now. Everyone is different, but at a minimum, these strategies should be: 

1. Reassuring or affirming to you; and 
2. Reliably damp down your High Stakes reactivity around stuff isn't likely to change any time soon (if ever).  

The good new is that this may be easier than you think.  For example, one of the most worrisome facts of our existence is that we all are going to die some day.  Yet many of us don't spend a lot of time worrying about that.  It's something we know.  It's always there in the back of our minds.  But mostly we focus on the task of living. We do our best to enjoy and make the most of the life we do have.  If that is the case for you, the fact that you have learned to cope with the ultimate uncertainty can be reassuring. It means you can probably find ways to cope with lesser challenges as well.

On the other hand, some of us are really freaked out about death,  It bothers us all the time, and the worry is hard to shake.  In this case, learning to cope may be a more gradual process.  We might have to try out a lot of things before we find something that actually ramps down our Survival reactivity around this ultimate deal-breaker. In the end, maybe spirituality, meaning, or friendships will provide us some comfort.  Maybe music or art will resonate with our fears so we feel less alone. Maybe we will forget our fears though love, laugh at them with humor, engage them creatively, or work them off with exercise.  Whatever rocks your boat.  The good news, again, is that if you can find your way to All-Is-Well while death is staring you in the eyes, then pretty much every other fear is yours for the baiting as well.  

Hopefully, this Chapter has given you a framework for understanding and and beginning to work with High-Stakes reactivity.  In subsequent Chapters, we will go into more detail about working with High-Stakes reactivity in ourselves, others, and when we're both reactive at the same time.

Chapter 5-1: Why We Need a New ‘Recovery’

Whatever recovery group we're in - mental health, substance use, criminal justice, anger management, stress management, the list goes on - we've been told we are defective. We've been told the problem is us. Somehow, some way, in someone else's judgment, we didn't do it right or get it right:  Our biology is wrong, our thinking is wrong, our feelings are wrong. We behave badly. We don't measure up.

For a lot of us, this is a familiar story.  We grew up with it and so did our families.  In schools, neighborhoods, communities, with key people in our lives. The misery and failings are our fault. Everybody else got it right, but not us. We need to work harder, try harder.  It's up to us to make it better.

 As adults, it's the same words and attitudes, but coming out of different mouths. The very people and systems that are supposed to be helping us are telling us, all over again, that we are the problem. Perhaps it's in kinder gentler words. 'It's not what's wrong with you, it's what happened to you.'
But the essential message is still the same.  In the opinion of some expert somewhere - whether self-appointed or officially licensed:

'The problem with you is [fill in blank]. It's your responsibility to fix it. Here's what you have to change and how. That is just the way it is.' 

That is the position the medical model takes on our lives, as we discussed in Part II.

As a factual matter, this approach just doesn't stand up. As we argued in Part III, the recovery we need is way bigger than mental or behavioral health.  It is about an entire social fabric that needs to change. The social determinants of health are well-known.  There really are some things that all of us need in order to live and be well.  According to the World Health Organization:

'Poor social and economic circumstances affect health throughout life….'These disadvantages tend to concentrate among the same people, and their effects on health accumulate during life. The longer people live in stressful economic and social circumstances, the greater the physiological wear and tear they suffer, and the less likely they are to enjoy a healthy old age.'

Social determinants of health: the solid facts (2nd ed.) p. 10 (Wilkinson, R. & Marmot, M. eds. 2003), http://www.euro.who.int/__data/assets/pdf_file/0005/98438/e81384.pdf.

In Parts III and IV, we showed how this plays out - as a practical matter - in mental and behavioral health. Across these demographics, adverse life experiences are nearly universal.  Roughly ninety (90!) percent of mental health, addictions, corrections and homeless service users have grown up in conditions of fear and want, whether social, economic or developmental.  The consequences are devastating and speak for themselves:

Trauma occurs when an external threat overwhelms a person’s coping resources... Untreated trauma that begins in childhood — which is often intentional, prolonged, and repeated — exerts a powerful impact on adult emotional health, physical health, and major causes of mortality in the United States. ... It is widely accepted to be a near universal experience of individuals with mental and substance use disorders and those involved in the criminal justice system. ... We cannot hope to rein in healthcare costs and improve healthcare quality if we don’t attend to trauma and its consequences. 

National Council Magazine: Breaking the Silence: Trauma-Informed Behavioral Healthcare, p. 10 (11:2012), https://www.thenationalcouncil.org/wp-content/uploads/2012/11/NC-Mag-Trauma-Web-Email.pdf

Currently as neighbors, communities, entire nations - we are operating in ways that produce devastating, irrevocable harms.  We are poisoning our relationships in the same way that we are poisoning the air we breath and the water we drink.  We are killing - rather than nurturing and developing - the good will that our collective survival depends upon.

We've said this before in this guide, but it is worth revisiting again:

Think about what it's like to be treated unfairly, go hungry, be thirsty, have nowhere safe to sleep at night or no meaningful way to make a living. Think about what it's like to be disrespected, hurt, called names, beaten up, pushed around, held somewhere you don't want to be, forced to do something you think is bad for you, work for an unlivable wage, be treated as a cog in a corporate wheel that could be thrown out at any time if a better model comes in…

This kind of treatment is distressing for most of us. Nobody does well when their basic human needs are ignored or violated.  The normal response is to feel threatened and insecure. If nothing changes, this can grow into full-blown mental distress and even chronic or extreme states. We can end up totally disconnected from ourselves, others and the communities we live in (anxious, depressed, detached, unreachable).  We can stop feeling like living or being alive (suicidal). We may stop caring how our actions affect others (apathetic, amoral, criminal). We may look for anything that deadens the pain of feeling so unbearably hopeless or alone (self-indulgent, impulsive, addictive).

If things are going to get better, we have to radically rethink what we mean by ‘recovery.’

• We need to get beyond labeling and segregating so-called problem people into so-called problem demographics. 
• We need to stop shaming and blaming each other for the widespread social dis-ease and human hardships that affect us all.  

As a practical matter, our current practice of treating so-called ‘problem’ individuals simply doesn't work.  It's like blaming people with beater cars for all the potholes on local roads.  They might be an easy target, but nobody is ever going end up with a smoother ride. To the contrary, the very people society tells us to focus on are, in actuality, the least likely to be able to make the changes we are asking for. As a group, they have the least power and and the fewest resources to make the positive changes (better jobs, better relationships, more community spirit, more life satisfaction, more vibrant beautiful public spaces) that practically everyone would like to see.

Even more important, our 'blaming the beaters' approach practically guarantees that things will get worse instead of better.  We spent Part IV explaining how devastating the survival response is to human health and well-being.  There is no better way to keep a class of people in survival mentality than for the rest of humanity to treat them like pariahs.   It is a recipe - not a remedy - for the very kind of extreme, irrational, impulsive self-focus that we say want to heal or change.

No less important.  This kind of behavior is NOT happening because:

1. People are that way naturally; or 
2. It is our chemical, biological or genetic destiny.  

To the contrary, it is simply what the survival response does.  In a word:

1. People perceive a threat
2. They feel scared
3. Self-protection becomes the core focus and top priority. 
4. The survival response gears up to aid with self-protection
5. Biological defense processes are activated and energized.
6. The defense processes go on hair-trigger reactivity.
7. Something small sets them off.  
8. The survival response 'shoots first, asks questions later'
9. In the aftermath, when things have calmed down, everyone is shaking their heads wondering how things became so extreme. 

It is not a mystery.  It is not a disease.  It is the biology we were born with.

No less important.  Consider the following:

1. Human beings are social animals.
2. We want to be well-regarded by others.
3. We want to be treated well by others.
4. We need the regard of others to get lawful employment.
5. We need the regard of others to be treated well.
6. Many of our material needs (food, shelter, heat, healthcare) depend on the regard of others.
7. It is difficult - and sometimes impossible - to navigate social systems without the regard of others.
8. A lot of our safety (e.g., protection from predation or disaster) depends on whether others (police, courts, neighbors, passers-by) think we deserve it.

Now think about the effect of being labeled a social pariah - mentally ill, addict, criminal, homeless -by the rest of your community.  No one regards you as trustworthy or valuable.  No one sees you as having anything to offer.  No one trusts you, so you can't get a job. Most people make active efforts to keep you away.  You have few if any options for meeting your basic needs.  Few people see you as someone with potential.  Few will take the risk of reaching out or trying to help.  You are hungry, cold, tired and rejected almost all of the time.  You have few if any legal options to shower or relieve yourself.  Everyone is more than happy to tell you what is wrong with you and what you should do to fix it. Almost no one cares about how you got to where you are or the zillion things you've already tried and found miserably wanting.  

In short, this kind of outsider labeling is a a sure-fire way to bring up survival reactivity  in almost anyone.  

That isn’t to say that we should overlook or gloss over these issues.  These issues have become entrenched and problematic for good reason.  At a minimum, there is mutual distrust on both sides. There are also ways that responses we have learned - on all sides of the social equation- are keeping the vicious cycle going.

Any worthwhile solution will need to address this. Otherwise, as a race, we will continue to trigger each other and simply stay stuck in the survival mode.

But, before we can address it (see Parts VI and beyond), we need to realize:

1. What we are up against: Survival Reactivity! 
2. What we can do about it:  How to work with it - and Turn It Off. 

That is the purpose of Part V of this manual.

Chapter 4-8: Why ‘Mental Illness’ is a Vicious Cycle and a Catch-22

Think about it. The High-Stakes response is activated when, in real life, the stakes are high. That means those of us who grow up in really difficult life circumstances will be in “High-Stakes” reactivity a lot of the time. As we have shown in prior chapter (4-5, 4-6, 4-7), their is massive overlap between the 'symptoms' of so-called mental disorders and the effects of the High-Stakes system. Accordingly, we can predict a lot of ‘mental illness’ being diagnosed among people who have had a rough time of it.

That is in fact exactly what is happening.  As it turns out, a whopping ninety (90!) percent of us in the public mental health system are 'trauma survivors.'  We have grown up without reliable access to basic human needs.  Things like:

• nutritious food, habitable shelter
• safety of person and property
• dignity, respect and fair treatment
• meaningful participation and voice
• support for our families to stay together and make a living
• opportunities to develop ourselves across major life domains
• freedom to make sense of experience in our own way

As previously discussed (Part III, chapter 3-2), these things are not optional.  They are essentials of life that every human being needs in order to feel well, live well and be well.

This is also not an individual issue.  Far too many of our families and neighborhoods are living without secure access to basic human needs as well.  Yet, without such access, neither individuals - nor the human family as a whole - can be well.

Once in the system, there is virtually no way out.  In behavioral health populations, “High Stakes” is the norm.  We are broke, unemployed, barely housed, victims of crime, targets of discrimination.
When we speak up about this or try to self-advocate, it is often treated as a 'symptom' of our ‘illness.’

The stakes for us are literally 'High' all the time.

This is the real biology behind what is getting diagnosed and treated as ‘mental illness.’ The source is not broken brains or individual genetics.  Our brains and bodies are working fine.  They are doing their job - which is to inform us of the very real, very threatening material, social and developmental circumstances we are currently facing in our real lives.  These circumstances are made worse - not better - by the fact that society sees us and labels us as 'sick' and 'disordered.'

There is nothing abnormal about us. To the contrary, our collective distress is a call to action. Our biology is telling the truth about the desperate circumstances of our lives.

The remaining question is what we can do about it and where to go from here.  That is the subject we will spend the rest of this guide attempting to tackle.

Chapter 4-7: Why The Dis-Ease Keeps Getting Worse

You hear a lot these days about how 'mental illness' is progressive and therefore requires early detection and intervention.  There are several problems with this:

1. It's not an illness.
2. It's not a progressive illness.
3. Longevity research suggests that many of would us do better without any treatment at all, as opposed to getting caught up in what the conventional treatment system has to offer.

However, there is a lot of truth in the fact that things tend to get worse rather that better over the long haul.  While these challenges may say something about us, they say at least as much about the world we live in and how modern society needs to learn and grow to meet the real needs of its citizens.
Here is why:

High-Stakes reactivity is a natural, predictable outcome when basic human needs -material, social, developmental - are violated, overlooked or ignored.  High-Stakes reactivity takes a tremendous toll on human minds and bodies. Under the influence of High-Stakes reactivity, the body's energy and resources are mostly being shunted to our muscles, heart and lungs.  Our hearts pound, we breath hard, and our muscles are tense and primed for action.

In this state of high alert, almost no one is able to relax, digest food well or get a good night's sleep. Our muscles are tense all the time and therefore burn up the needed resources (oxygen, nutrients) that should be going to our brains and vital organs.  As a result, we can't process nutrition effectively and therefore become progressively malnourished over time.

Adding insult to injury, we can't sleep - which is when our bodies and brains are perform routine maintenance and make needed repairs.  In actuality, our bodies are nature's surgeons.  Every night while we are out cold they perform complicated operations to repair our vital organs and delicate nervous system circuitry.  If we don't sleep well, they are limited in what they can do or fix.

If we just think about this a little bit, it is also not hard to see why so many of us:

• Feel exhausted, depleted and unmotivated
• Have trouble with memory and keeping track of things
• Are concerned we are missing something and not thinking well
• Have trouble making decisions or setting priorities
• Experience ourselves seeing/ hearing things that others don’t seem to 
• Feel totally out of touch with the outside world (our brains can barely pay attention to the inside one)
• Experience the world as playing tricks on us or out to get us (something sure is!)

Given the continual stresses we are under, and the fact that we hardly ever get a break, our minds and bodies simply don't have the support they need to heal and help us get us back on or feet.

When we put these factors together, it is relatively easy to understand the social and employment effects of ‘mental illness.’ As a group, our people have taken a tremendous amount of flack for 'isolating' and 'being unmotivated.  But, when you think about it, almost no one would feel capable of going out or navigating the world in the above frame of mind. Applying for work or trying to make friends when it's gotten this bad is a recipe for disaster. All too often we end up being judged or rejected as a result of the difficulties we experience under the influence of prolonged High-Stakes activation.  Or we lose important paperwork or get robbed or ripped off because it's too hard to pay attention once we've become this depleted and run-down.

Here is an analogy:

Imagine your body is like your car.  Every so often your car needs an oil change and routine maintenance.  If it doesn't get that sooner or later it is going to break down.

Now imagine continuing to drive your car like that for weeks, months or years. Even worse, imagine driving your car with the same oil and no new servicing for a life time.  That is basically what is going on with the profound kind of trauma that some of us have had. You know if you've had that kind of trauma because you've never, ever really felt safe.

In these circumstances, you don't know exactly what is going to break down.  But you can be certain that sooner or later something is going to malfunction:  This is your brain in the High-Stakes system.

Simply stated, just like your car, the general rule is this:

1. The longer our needs go unmet, and 
2. and the more severely our needs are neglected...
3. Then... the more extreme are the issues that will arise,
4. and the harder it will be to fix them.

This rule clearly explains why many of us keep getting worse and worse.

1. We've had important needs that have gone unmet
2. We've lacked the resources we needed to address them... 
3. So... they've stayed unmet for a really long time, 
4. and our problems have compounded, making them really, really hard to fix.

Once we understand this, it's not so hard to see what is going on with so-called ‘serious mental illness.’  Of course we experience things like 'psychosis', 'delusions', 'perceptual disturbance' and 'irrational thinking'!  (Duhhh!)

The fact of the matter is that, in High Stakes circumstances, human brains don’t get what they need to reliably function. They don’t get the energy or resources needed to pay attention to the ‘big picture.’ They don’t get what they need to effectively read the environment or make sense of the wide variety of incoming information.  The longer and longer this goes on, the worse and worse it gets.  It therefore is predictable (not surprising) that many of us are breaking down under the impact of our stressful lives.

It's also pretty easy to see why conventional treatment makes things worse instead of better for so many of us.  Conventional treatment (meds, hospitals, shock) focuses mostly on our 'symptoms.' However, as we've seen, our 'symptoms' are there for a reason:

They are alerting us to the fact that 

IMPORTANT NEEDS AREN'T BEING MET!   

Yet, for the most part, conventional  treatment does very little to address these important pre-existing stressors.  At best, the drugs mask our symptoms, or we are taught 'coping strategies' to adjust to the fact that our lives aren't working.  Rarely is anything done to address our real problems - the very real material, social and developmental needs that every human being has - that are going unmet for so many of us in conventional society.

In other words:

1. There is nothing inherently defective about our brains of bodies. 
2. The challenges we have been facing are very real.
3. Many of us will break down in such circumstances
4. This is not an illness -- and it is not even surprising.
5. It is a 'normal', predictable outcome of how conventional society is operating. 
6. It is what human minds and bodies do under prolonged stress when we can't access the resources that everyone needs to feel well, live well, and be well. 

This is a social dis-ease, not an individual one.   Many, many people in our modern world are in this situation.  It is going to progress until we make progress.  The most important progress we can make is to start treating each other better.  At a minimum, we need to ensure that everyone of us can access the material, social and developmental resources that all of us need in order to feel well, live well, and be well.  Conventional treatment - with its focus on medical expertise and treatment compliance - has not begun to scratch the surface of the human needs that really matter.