Sep 4, 2013

Psychiatric Survivor Manifesto

Corinna West and I have been having a dialogue during 2013 about the core beliefs of the psychiatric survivor movement, and about points where her beliefs and mine are compatible. We've both had so-called "lived experience" and put the lessons of  our personal recoveries into what we write. My book Defying Mental Illness has a fair amount of content she objects to. I find much wisdom in what Corinna writes.

Corinna has just written a piece that tries to express the beliefs of the psychiatric survivor movement. It's a document in the Alternatives 2012 Facebook group page. Doesn't most of this sound, for lack of a better word, normal?
Psychiatric Survivor Manifesto
By Corinna West
   There are many reasons for extreme emotional states or biocognitive challenges. These often come directly from life situations that overwhelm a person's social supports. Increased community engagement and mental health prevention can greatly reduce costs, improve human rights, and increase recovery rates. A model that views all emotional distress adas a chemical illness which is best chemically treated has scientific limitations. This “disease model” approach, also called the “medical model,” has been shown to help some people, but it harms many others, and it may be increasing the amount of disability in our country. Instead, we want people who have completely recovered from mental health crises to share what was most effective for them. We can help our peers strengthen social supports, find someone who's been there before, and link people to their personal power.  We know how to come through the fire. We've done it.

   This is a summary compiled by people in the mental health civil rights movement. Some of us call ourselves psychiatric survivors, one who has survived psychiatric treatment, not the “illness.” Many of us have found scientific evidence and our own personal experiences showing that emotional distress is not an illness. We have found recovery using a variety of approaches and methods, but here are several concepts of hope and empowerment repeated in many of our personal stories.

6 ideas for complete mental health recovery compiled from psychiatric survivors.

1) Use prevention services instead of crisis-only services. This avoids a repeat of negative experiences based on coercion and force. Up to 40% of people admitted to a mental hospital have never received any kind of peer support or community care, which would greatly lower treatment costs. Peer support centers like nationally recognized S.I.D.E. in Kansas City, KS, have been able to increasingly carry this first contact burden through recent budget cuts.

2) Focus on recovery and wellness. Over 60% of the early mortality to people with mental health labels is due to preventable physical illness. Focusing on total body health, with choices made by each service recipient, greatly improves outcomes. The mental health center coalition in Kansas City hosted a walking challenge where agencies competed to post the most steps taken,, and many participants got to see their city in a whole new way. Also, use existing community services like sports or hobby or faith based activities. A day of community mental health center treatment is 1/16 the cost of jail treatment, and 1/40  the cost of a day in a mental hospital. But finding support and encouragement already in the community, before people are completely overwhelmed and seeking medications and diagnoses, is an even more powerful source of cost savings.

3) Let people know that emotional distress can be temporary and transformative. There are very many valid definitions of recovery, but “all this goes away,” is still the most hopeful and encouraging. Let people meet mental health care graduates and learn their methods. Poetry for Personal Power is a Missouri statewide stigma reduction program where hip hop artists and spoken-word poets share that emotional distress can come from many resolvable sources. These include trauma, lack of social connection, job fit or career goals, grief or loss of hope, spiritual unrest, drug use, nutrition or self-care habits, or brain injury. According to national advocate Duane Sherry, “Psychosis is an event, not a person.”

4) Used nuanced approaches to medication. We ask for fully informed medication use, where all people get honest information about long term efficacy, the risk of worsening a situation, the link between violence and medication use, and the difficulty of medication withdrawal.  Without a complete assessment of this data, none of the decisions made in mental health care are very accurate. Wellness Wordworks, a Mind Freedom affiliate in Kansas City, has shared extensive information about safe, supported and meticulously planned medication reduction strategies. Community mental health centers that shared this information and monitored doctors who repeatedly violated good clinical practice could greatly reduce medication costs. If a life situation caused a person's emotional distress, the solution will likely be a life situation change, not a chemical change.

5) Genetic research should have peer input and honest reporting. The vast majority of mental health research funding goes towards a “disease model” perspective. There is limited use in searching for physical causes of emotional distress in complete separation from a person's life situations. Reports should be honest that a genetic correlation report is meaningless unless both linkage and association studies can be paired. Truman's Prime Time peer support center instead has participated in research that was presented last week on a national webinar to show how all peer support centers can improve their services to promote recovery.

6) Give people in emotional distress a map out of that distress: 1) know that handling adversity is universal human experience, 2) talk to people who have been there before 3) resolve the overwhelming life situations, and 4) find what gives you Personal Power. The Common Ground program at the Wyandot Mental Health Center shares stories of personal power gathered by Patricia Deegan, a person who completely recovered from schizophrenia.
I think this approach is thoughtful and valid in many respects. Notice how much wisdom is evident after you scratch out whatever words you don't like.

Update:

Today's consumer/survivor movement of course has its roots in the experiences of the post-deinstitutionalization era. There's a history to all this. People may or may not reject the underlying medical theory around mental health issues, but there's been a long history of people seeking to create an experience of community and mutual support around mental health. Here's a video about the MPA, an organization that began in the early 1970s in Vancouver. Notice the tension between the experience of community and self-advocacy, and the necessity of an institutional framework in order to deliver services. Learn more about the film here.




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