Presented at WPA International Congress of Psychiatry, November 2004, Florence
Last night Dr Sartorius spoke about context. Let me provide one for myself. And last night Dr Tasman spoke of empathy. Let me become more than a diagnosis.
There are at least three of me standing here:
The matron I was scripted to be whose neighbors and club peers would have included you;
The client I was in my twenties, looking up to you and feeling naked and transparent and small;
The advocate, the person with a psychiatric disability wanting to change the mental health service delivery system.
I expect there are many of you in the audience who understand about mental health consumer advocacy, many who don't know what all the ruckus is about, and some who are dismayed by the use of the word "survivor."
I've been thinking about what the idea of partnership means and the elements of successful ones.
I put the words "health partnership" into a web search engine and got 52,000 hits; "mental health partnership" got 12,000. What is all that coming together about?
Partnership suggests equity, reciprocity, responsibility, symbiosis - that the whole is bigger than the sum of the parts. Your 1996 Madrid ethics declaration notes mutual respect, joint action, trust, free and informed decisions. Mutuality "involves finding ways to make interactions growth-fostering for everyone in the relationship," for power is not zero-sum, and we need to stay aware of the traditional power imbalance. Miller speaks of creating "power-in-connection" and suggests that in a relationship that leads to mutual growth and empowerment, the participants experience zest, action, knowledge, worth, and a desire for more connection. I think these five markers for relationship - zest, action, knowledge, worth, and a desire for more connection - apply to our theme. But good partnerships are not always valued, and their absence has been part of the creation of a reform movement, of which I am part and in which Italy was significant.
I'm going to tell you a little about my own story as a person with a psychiatric disability, some thoughts about listening and language, describe a couple of attempts at partnership, and point you to a web page that has a longer list of those ideas - peoplewho.org/wpa - and that's in your program.
About me: You know there have been many myths about psychiatric and neurologic disorders. There is another myth -- about recovery. 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 mahogany coffee table I had custom designed for our living room. I had just signed out of McLean Hospital in Belmont, Massachusetts, "Against Medical Advice" with a prognosis of increasing deterioration and dependency. 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 transformation I needed a political voice; self-help wasn't enough. Years of depression had been incubation, preparing my mind. Now social action is taking me beyond symptom management and compliance to hope, integration, and a valued place.
This social action is part of the global mental patient movement, which has a constant base of shared user values: self-determination, dignity, hope, reciprocity, witnessing, spirituality, diversity. Here in Italy, democratic psychiatry was a successful transformative strategy (Donnelly). What is now the World Network of Users and Survivors of Psychiatry - WNUSP - was established in 1991 and held its second global congress last July in Denmark. The bottom line of the WNUSP position is that everyone has legal capacity and the right to make their own decisions and there must be access to meaningful alternatives in order to support this self-determination. The European Network, ENUSP is part of the European Disability Forum. Nearly every country and state in the U S has an organization (Center For Mental Health Services 98-013). But WHO notes that in much of the developing world, patient/consumer movements are embryonic and there is little community or self-perception of consumers or carers as partners in the mental health policy development process. Users are isolated.
Isolation is a major part of psychiatric disability. In 1994, I sent a first email message to people who experience mood swings, fear, voices and visions. At first when we communicated via email, there were a lot of professionals who would speak to us on the discussion lists. They didn't know we were mental health clients and it really helped to level the field and to give both sides perspectives of each other. That has changed considerably in the last few years. More and more, the groups are talking just to themselves. The tag line of our People Who website says " each other on the Internet, advocacy and support." I'd like us all to be talking with each other, paying attention to the words we say to each other and the words we say to ourselves.
So my first suggestion for partnership is about listening. You are experts in listening. Use that expertise to step down, listen actively, connect to my experience, my class, my cultural context. Walk in my shoes; let me lead; ask me what helps; ask me what hinders; guide me in recognizing, understanding, and managing my own health.
The US Surgeon General noted: "Clinicians view symptoms, diagnoses, and treatments in ways that sometimes diverge from their clients' views especially when the cultural backgrounds of the consumer and provider are dissimilar. This divergence of viewpoints can create barriers to effective care. ... The cultures of the clinician and the service system affect diagnosis, treatment, and the organization and financing of services" (Mental Health).
Next, though I know you are practical people, I would like you to be contemplative with me for a bit, to think about how the very words you use shape how you, and those with whom you talk, perceive people who experience mood swings, fear, voices and visions. So my second suggestion, about language, is harder.
The words in which we think about things shape our understandings. When you use professional shorthand, talk about a schizophrenic or the mentally ill, the person with the disability fades into the background, invisible.
I am asking you not to use professional expert medical words and instead to use ordinary language, people-first language. Distinguish me from my disability. Not, ever, schizophrenic, but person, a person who ... plays the tuba, hears voices, lives in Rome, ... .
Mostly you see us in crisis, as a patient. Use your imagination to envision a whole and individual person. Yes, the crisis can be diagnosed and categorized and treated based on evidence, and the crisis is embedded in a whole and unique individual and it is that whole person, not just the diseased portion, who wants to partner with you for wellness.
What may seem chaotic to you and requiring control and intervention is the ground of my life, my mind. Naming that as illness leaves me without redemption. I'd like to be the creator of the model that sorts things out, not have a model thrust upon me. Help me build a world, a way of understanding my mind, in which I can flourish. Humans are defined by their capacity for self-determination. Don't take that away from me. Humans are defined by our self-consciousness. When you say I lack insight I feel put down; I feel that you have denied my very humanity.
You are scientists and are trained in finding patterns and fitting people and data into categories. And I am asking you to look at the uniqueness. Because the goal of care must be the outcome I choose, stated in the words I use. Using whole- person language can help.
Themes of collaboration and partnership and coalition are prominent today. We are still awkwardly working out how to implement them. Five global and local instances:
WHO's World Mental Health Report and the subsequent and related documents have reached out for user comments. Requesting comments from users is a beginning that I appreciate. A process that reaches out to some for comment and centralizes the receipt and review of the comments leads to a different result from a process that reaches out to many and enables those many to discuss their comments with each other and then submit some consensus, and perhaps minority reports as well.
Governments, organizations, and individuals have been partnering to generate Summit meetings to create a United Nations Human Rights and Disability Convention. In 2001, Mexico moved this forward by going directly to the General Assembly. Gabor and I have been participating in person and by email, representing WNUSP in the Ad Hoc Disability Caucus. An extraordinary alliance has been created among disability groups leading to agreement to expand the concepts of universal design to using universal language relating to rights -- to not single out, for instance as the Mental Illness Principles do, any one disability -- to present mental health, instead of a carve-out that fosters discrimination, as a seamless and fundamental part of health. In order to emphasize self-determination and choice, it is important to ensure that people with psychiatric disabilities are included in each country's delegation. For those of you who have political influence in your countries, there is a significant opportunity for partnership here by suggesting our inclusion in the delegations.
In another global initiative, the disability community, including psychiatric disability, held a Global Disability Forum at the World Summit on the Information Society and agreed, in the Geneva Declaration, about the importance of access to information in assuring human rights.
In Los Angeles, a Mental Health Association program, The Village, is an Integrated Services Agency. The Village offers a comprehensive program for people with serious mental illnesses, an array of options for members - clients are called members - which supports individuated services in all quality of life areas (i.e. employment, residence, social, substance abuse, etc). Staff focus on encouraging members' free choice of any option at any time.
New in the United States is an initiative towards self-directed care where the money follows the person. The state of Florida, for instance, allows individuals a high degree of self-determination in choosing publicly funded behavioral health care services, letting each person control the public mental health funds allotted for treatment by directly purchasing services from the vendor of their choice. Individuals are offered independent advice and guidance in securing the services they want to begin the recovery process and the available network includes private professionals and broadens the array of service options.
I've put more examples and ideas and some internet addresses on the web for you at peoplewho.org/wpa . I'd like you to leave with these ideas in your mind:
You know that listening is where you learn everything. I want you to keep listening, remembering that the experience, the diagnosis, the interventions (force, hospital, restraints, seclusions, ect, tranquilizers) - all take away our sense of control. You can help restore that. We want a sense of connection and a sense of meaningful purpose. You have the authority to evaluate my judgment, commit me, medicate me against my will. Recognize the power you hold. Use that power gently, so that I can feel safe to trust in our partnership. Most of us who are doing well tell a story of one professional who made a difference, was respectful and accessible and listened. Let that one person who makes a difference be you.
Notes and References
Michael Donnelly, The politics of mental health in Italy, 1992. London: Routledge
Mental Health: Culture, Race, Ethnicity, http://www.surgeongeneral.gov/library/mentalhealth/cre/
Jean Baker Miller, Telling the truth about power, Research and Action Report, Fall/Winter 2003, 251, Center for Research on Women, Stone Center, Wellesley College, p 51 http://www.wellesley.edu/JBMTI/
World Health Report 2001: Mental Health: New Understandings, New Hope
World Summit on the Information Society
New Zealand uses a fine definition of recovery - they say recovery means living well, with or without mental illness.