|The MadGrrls List
have mood swings, fear, voices and visions, and the Internet
I love collaboration, because when it really works well, you can do things far
beyond what any one of you could even imagine on your own.
|Persimmon Blackbridge is an award winning writer, visual artist and performer. She is the author of two novels and co-author of four works of collaborative non-fiction, as well as creating four major collaborative art installations and many solo exhibitions. She performs regularly with the Kiss & Tell collective. Persimmon is a founding member of the MadGrrls List.|
|Presented October 16, 1998
Jean Baker Miller Training Institute
Wellesley Centers For Women
Sylvia Caras and Kathryn Cohan
Kathryn and I each believe it was because of the other that we initiated contact with Jean Baker Miller, MD, of The Stone Center for Women. Kathryn feels that she was trying to re-connect with an old resource from her thesis work at Lesley College. I felt that I was using my Wellesley connection to support Kathryn's interest in women's development. We discovered this when we were trying to thank each other and give proper credit to the wonderful opportunity to share our thoughts at the October 16, 1998 Members' Meeting.
We are straining for a vocabulary, each wanting to use the language we know. Kathryn's thinking has been in development, Sylvia's in math. Kathryn speaks of growth, Sylvia of motion. We are sometimes reconciling, sometimes not.
Growth and development seem good words to apply to a human's emergence, from seed to physical maturity. I would like other words for what happens during adulthood. I think then what is happening is not so much linear end directed as fluid. That what enriches is inner mobility, motion and change and not staying in one position. Certainly connection and relation is integral and I want an image in my mind that is more restless. I am thinking of economics and concerns for unbridled expansion and depletion of resources and zero population growth and small growth and wanting this model to not accept as a given that "Growth is Good".
I am not a scholar and I am not a teacher. I read and learn and find the portion to integrate into my own life. I often acknowledge the debt to an author or source, and I don't retain enough to formulate the work of the other in an objective or thorough way. As it was released, I've read much of the work from the Wellesley Center for Women and from other writers concerned with women's way in the world. You may find a shameless use of your vocabulary. I've read and reread and integrated and I no longer know who was first.
I heard poet Rodger Kamenetz speak of an alternate translation of the first thought in Genesis.
Based on the concept that words would only initially exist to communicate with another
not with oneself, he suggested translating "in the beginning was the word" as
"in the beginning was relating."
You here know the value of groups the mutual support and affiliation. You live this in
your work. Will we surprise you to show how your theories work on the Internet? On the
MadGrrls list which Kathryn facilitates, 50 women who experience mood swings, fear, voices
and visions are connecting by sharing like experiences of disconnection.
I came late to the Internet. What Sylvia had been creating and growing for four years I
entered toward the end. My own journey had often flirted with computers as models for
human intelligence, and used them to furnish data and information to others, but it wasn't
until last year that I joined the voices-in-text that is the medium of an Internet forum.
I have spent the better part of my life living with what is called "mental illness" and not knowing it. Once I had awareness, I did not embrace it. I named it "other" and wanted separation, did not want to own that these disconnections from reality were mine to have. That is how I was trained to think about mood swings, fears, voices, and visions: in the average treatment setting the goal is to assist "the patient" in living a life as close as possible to one that does not have these experiences. I believed and followed and did my best for seven or eight years and concluded "no more". Something different was required. I believed that I needed, in order to survive, a new way of living with periodic disconnections from "consensus reality".
I began to conceive that one way might be to live with it, and in living with it I found that I was living in relationship with something vital and important. I recalled my own work done ten years earlier when I returned to college to finish the degree abandoned 17 years before that, and I began again to ask questions about the nature of collaboration, the process of making meaning, and how these things related to gender. My life has been a series of "autonomy failures", and I was comforted and made whole by the alternatives offered by the relational approach and others.
My gender, I was certain, was responsible for how I came to view
"relationship" as a possible way of living with "mental Illness". For
women who had mood swings, fear, voices and visions - - extreme states consisting of
extreme simultaneous disconnections -- I concluded that an ideal world would consist of
communities that were inherently supportive in a new way. Language, and the process of
consensus that guides "shared meaning" would have extraordinary value. So when I
was offered by Sylvia the opportunity to "own" a new list, I saw immediately
(but hardly fully) the potential to create something that until that moment had existed
for me only in theory.
Sylvia provides a little historical context:
In the twentieth century, as advanced societies moved from manufacturing to service, 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 (Reissman, Chamberlin) and was nurtured by the politics of empowerment in an increasingly self-help oriented society (Katz, Zinman). From the beginning there was a drive to unite in hope of change, or at least raise awareness, and to release some of the feelings of anger and betrayal.
In the 60's, the mental patient movement challenged psychiatry's hold on explaining behavior and remained separatist. Madness Network News published survivor accounts and views. By the 80's, diagnosed people were changing the mental health system from within (Church). Some groups maintained a strong anti-psychiatry ideology; some developed institutional collaborations or at least interactions (Emerick). Beginning in 1985, the federally sponsored Alternatives conferences gathered consumers, survivors, and ex-patients who shared views as divergent as what they chose to be called. By the end of the 90's the federal government and three fifths of the states had consumer affairs specialist offices (Center For Mental Health Services 98-012).
The 90's is emphasizing jobs and consumer operated business (Church). Nearly every
state has a statewide organization (Center For Mental Health Services 98-013). How to
reshape the rhetoric to effect reality is a central question (Everett). Social action and
social change remain a core activity (Van Tosh). The twenty-first century may again pose
the challenge of rights as the family movement campaigns to lessen the legal protections
and increase coercive medical interventions and institutionalization (NAMI).
Almost all current mutual support and advocacy of people who experience moods swings, fright, voices, and visions is supported by local and national mental health systems and associations, drug manufacturers, and grants. Some believe that this kind of funding dulls the philosophic edge of the grass roots user movement and supports biomedicine instead of healing and autonomy (Caras). I believed linking us electronically could avoid the influence of a major funder by distributing costs. There is a public intention to involve users of mental health services in their services and to have users directing their own care. I came to believe that access to each other on the Internet must be part of this involvement.
That access enabled me to join with a vibrant community of voices from all over the
world, and I began to understand my own isolation in a different way.
I posted to my MadGrrls list:
We have obtained permission from the contributing members of the list to use a sample "thread". This thread is from a couple of months ago and is one of hundreds that the list has discussed over the year.
For us, the Internet work is the work of connection, and we hope that in sharing our "being public in private" with you, we are also illustrating the many levels on which our work has a substantive impact on the members of our community.
We have written collaboratively on what many people who experience mood swings, fear, voices and visions have come to know.
The relational five good things remind me of what science writer Ian Stewart calls complicity, a joint emergence. (I am intrigued that this word which has roots in "folding with" and partnering with should have evolved to mean doing wrong.) It seems to me that for us what appears to others to be maladaptive behavior is a partially successful mapping function working to retain integrity while transforming the whole self.
What we are understanding of our own experience, and what we would like you to talk with us about, is the many roles the experience of "disconnection" plays in mood swings, fear, voices, and visions.
Internal disconnections evoke external personal disconnections as we misunderstand and are misunderstood by others, by ourselves and by the community. When they are applied, coerced interventions prevent completing our experience and leave a residue of unexpressed and unprocessed emotion. We feel feared, we feel discriminated against, we feel "othered" in all contexts and all times ... except, sometimes, among ourselves. Based upon the exceptionalizing of our experience, we are beginning to think of the cultural experience of living with a psychiatric label as full of "collateral disconnections".
What we are doing on the Internet is all about connection; a connection that heals and ameliorates and offers an alternative to the many disconnections inherent in the experience of mood swings, fear, voices and visions.
Bruffee, Kenneth A. (1998). People's Way of Knowing: To The Lighthouse and The Social Construction of Knowledge, Brooklyn College
Campbell, J. (1993). Humanizing Decision Support Systems, Consumer/Survivor Mental Health Research and Policy Work Group. http://www.mentalhealth.org/resource/orderfrm.htm#C/S reprint DSCSD17.
Caras, S. (1994). Internet E Mail Access for Users of Mental Health Services. Retrieved September 1, 1998 from the World Wide Web: http://www.peoplewho.org/Madness/InitialProposal.htm
Caras, S. & Cohan, K. Transformation. Retrieved September 15, 1998 from the World Wide Web: http://www.connix.com/%7Enarpa/transform.htm>http://www.connix.com/~narpa/transform.htm
Center For Mental Health Services. (1998). National TA Centers, Guidance for Applicants (GFA) No. SM 98-012, Rockville, MD.
Center For Mental Health Services. (1998). State Network Grants, Guidance for Applicants (GFA) No. SM 98-013, Rockville, MD.
Chamberlin, J. "The Ex-Patients' Movement: Where We've Been and Where We're Going." Retrieved August 31,1998 from the World Wide Web:http://www.concentric.net/~power2u/juditxt.htm
Church, K. (in press) Strange bedfellows: seduction of a social movement in Shragge, E. and Fontan, J.M. (eds.) Social Economy Debates in the 21st Century. Montreal: Black Rose Press.
Daloz, Laurent A. (1997). Effective Teaching and Mentoring: Realizing the Transformational Power of Adult Learning Experiences. San Francisco: Jossey-Bass Publishing.
Emerick, Robert E. (1991). The politics of psychiatric self-help: political factions, interactional support, and group longevity in a social movement. Social Science & Medicine, v32 (n10): 1121 - 1128.
Everett, B. (1994). Something is happening: the contemporary consumer and psychiatric survivor movement in historical context. Journal of Mind and Behavior, v15 (n1 and 2): 55 - 70.
Katz, A. (1993). Self-help in America: a social movement perspective, New York: Twayne.
NAMI. (1997, November 5). Legal advocacy to end barriers to care for millions. Retrieved 23 August 98 from from the World Wide Web:http://www.nami.org/pressroom/971221230014.html
Riessman, F. & Carroll, D. (1995). Redefining self-help: policy and practice. San Francisco: Jossey-Bass, 13.
Schecter, B. (1998). My brain is open: the mathematical journeys of Paul Erdös, New York: Simon & Schuster.
Van Tosh, L. & del Vecchio, P. (In press). Consumer/survivor-operated self-help programs. Prepared for Community Support Program, Center for Mental Health Services, Rockville, MD.
Zinman, S., Harp, H, & Budd, S. (Eds.). (1987). Reaching across: mental health clients helping each other. Riverside, CA: California Network of Mental Health Clients.