Saturday, April 22, 2017

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  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.


  • 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'

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