These remarks were prepared for an oral presentation only, on short notice. All the citations and quotation marks and attributions are missing. The disability model paragraph is based on Kaplan. The history paragraph is an abbreviation of a literature search and every sentence should have attributions in parenthesis. 

Why Transformation Matters: Understanding Mental Illness and Recovery
    Nothing About Me Without Me

Sylvia Caras, Phd

I'm going to start with some context - the social model of disability and some history - talk some about language, tell a bit about me, and close by imagining what a transformed system might be like.

There are several ways to understand disability. Some think it is a sign of sin, a punishment for wrongdoing, or an invasion of an evil spirit. Some think it is a medical matter, a genetic engineering mistake that must be fixed. Especially for disabilities that occur after birth, some want to rehabilitate and restore the person to the prior state. Today advocates generally prefer the social model, understanding how society and the built environment constrain opportunity. (1) For instance, it is not that a person uses a wheelchair that is disabling, but rather that society has not included wide doorways and ramps for wheelchair access. Mental patients, now we say people with psychosocial disabilities, also chose this social model as a basis for organizing.

In the twentieth century, as some societies moved from manufacturing to service, in the developed world the self help movement and the human rights movement parented the mental patient movement. This new movement inherited the self-help principles of volunteering, mutuality, valuing the experiential, and deflating professional privilege, along with the civil rights focus of other disability rights, gay rights, and women's movement groups and was nurtured by the politics of empowerment in an increasingly self-help oriented, now an ownership, society.

In the 60's, the mental patient movement challenged psychiatry's hold on explaining behavior but remained separatist. By the 80's, diagnosed people were changing the mental health system from within. Some groups maintained a strong anti-psychiatry ideology; society was urged to increase social acceptance of human diversity. Some groups developed institutional collaborations or at least interactions - partnerships.

Either way, there is a shared user value base of self-determination, dignity, hope, reciprocity, witnessing, spirituality, diversity, ... and personal competence is connected with a desire for and a willingness to take public action (1).

In 1978, the World Health Organization stated that health is holistic, biopsychosocial, and I would add spiritual, and that "the people have the right and duty to participate individually and collectively in the planning and implementation, and I would add evaluation, of their health care," and that a target is a "socially and economically productive life."

Mental health has been failing on all counts - though users and survivors are beginning to be included, that inclusion is not yet meaningful and effective.

Partly because there are: a pervasive assumption of our disorder; a cloaked process, a lack of transparency about how the system works, and an unwillingness to shift to a more-than-medical understanding.

I was asked to tell a little of my own story. As I started to make notes I got angrier and angrier and sadder and sadder. The tentacles of the trauma of the treatment wrap around me; sometimes I can't remember without reliving. I've had four psychiatric diagnoses in six hospitals three times against my will. In 1967, my husband placed Abram Hoffer's new How To Live With Schizophrenia on the coffee table. I had just signed out of McLean Hospital in Belmont, Massachusetts, "Against Medical Advice" with a prognosis of increasing deterioration and dependency, based partly according to the records on my thinking about electronic global networks and that I didn't wear lipstick. Twenty years later, handcuffs and medication without consent as a medical treatment for my illness converted me to a health and human rights advocate. I realized that for my own healing I needed a political voice; self-help was not enough. Years of loneliness had been incubation, preparing my mind. But it took 7 counselors and 25 months for the California Department of Vocational Rehabilitation to grant my request for schooling (I completed my doctorate in October 2000). And now social action is taking me well beyond symptom management and compliance to hope, integration, and a valued place.

In the fall of1997 Kathryn McNulty, now Director of NAMI Consumer Education Programs, and I, uncomfortable with what we thought recovery suggested, wrote that our lives are a spiral journey of renewal and integration and we called the dynamic nature of this process transformation, the opportunity available in the midst of crisis that evokes a substantive change within ourselves.

The next year, working on models and definitions, I wrote "I am not recovered. There is no repeating, regaining, restoring, recapturing, recuperating, retrieving. There was not a convalescence. I am not complete. What I am is changing and growing and integrating and learning to be myself. What there is, is motion, less pain, and a higher portion of time well-lived."

But the word recovery is now in common use. SAMHSA recently published a definition: "an individual's journey of healing and transformation to live a meaningful life in a community of his or her choice while striving to achieve maximum human potential." Personally the idea of maximizing my potential is laden with values I don't share, suggests to me that I will never have done enough, never be good enough, because no one can ever be maximized.

New Zealand uses a fine definition of recovery - they say recovery means living well, with or without mental illness.

All this about what the words mean matters, because the words in which we think about things shape our understandings. What may seem chaotic to you and requiring control and intervention is the very ground of my life, my mind. Naming that as illness leaves me without redemption. When you say I lack insight and thus justify force treating me, I feel that you have denied my very humanity.

There are inherent tensions between ethical values - autonomy v beneficence, utility v justice . In the models which value autonomy and justice, when there is inpatient or outpatient treatment of adults without their legal consent the system has failed. When the legal capacity of adults is overridden, the system has failed. Therefore a first goal of any ethical transformed system will be that all medical interventions must have full and informed consent.

For the goal of care must be the outcome I choose, stated in the words I use. A system focusing on personal outcomes is a system transforming.

We will have many lessons from the hurricanes.  One will be that people who experience mood swings, fear, voices and visions are people first and are responding to these events the same way as others, with courage and caring and despair and breakdown.
Change is exciting, change is threatening, the big picture will not look familiar, change does not mean losing your job. Change does mean a fresh look at prevalent ideas.

Take best practices. Evidence-based practices have been used long enough to be studied and researched and may or may not have had consumer involvement or be based on consumer values . By their very definition they are no longer innovative. Narrative is the research gold standard for innovation. Be brave and bold, even have the courage to make a mistake, and to listen to the experience of people who themselves feel transformed and to how they attribute their well-being. Encourage these programs. Individualize. Listen to your local client voices.

Because, and I'm quoting from the UN report on the Millenium Development Goals, "It's the same everywhere: Succssful projects adapt to local conditions and identify bottlenecks."  (no citation)

But the present legal liability and malpractice threats are a huge obstacle to this kind of creativity.

Primary prevention takes a community approach, looks at environment, diet, toxic construction materials, noise pollution, all of which can exacerbate the discomfort of people who are sensitive.

I think the most significant transformation would be to focus on ending our current harsh culture of abuse, removing the social permission for sexual relationships between fathers and daughters, brothers and sisters; changing the social climate so it frowns on family abuse, frowns on parents disciplining by slapping a child on the head or beating with a belt, frowns on partners battering each other. As many as 85% of those who become chronic users of public mental health services have been abused, usually in early childhood, usually sexually. Even though it would take a generation of two to see results, dealing with this public health concern would have a lasting impact.

A transformed system with a community focus will be honest and transparent, seamless, inclusive, responsive, accessible, ...

Seamless, for instance, means integrating funding silos and approaching health as a mesh of biological, psychosocial, spiritual and vocational well-being, carving IN mental health with health, networking with other disability organizations, other social service organizations

Inclusive requires meaningful consumer involvement in policy, planning, budgeting, implementation, evaluation

You do know the problems; you do know what transformation means.

When I hear consumers tell their stories I am struck by a common thread - at least for we have become advocates, we were throwaways, fragmented selves discarded by a fragmented system. We are here today to put those fragments back together, with glue and hairpins and baling wire if need be to piece together an integrated individualized respectful caring system of support.

Many here have spent a long time convincing the citizenry that mental illness is real, and then that recovery is real. I want you to show me that transformation will be real.

1. This presentation was prepared only for an oral presentation, does not have the proper citations, despite being here in written form.

Presentation September, 2005 to transformation leadership regional meeting, Los Angeles.