Sylvia Caras, Ph D
Founder, People Who and The Madness Group
Computer-mediated communication is a new dialogue technology. Electronic mail -- E mail -- is less formal than usual written exchanges and less textured than in-person dialogue. E mail is forgiving of punctuation and spelling errors and typos. E mail is intolerant of affectation and tends to ignore pedigree. E mail substitutes for non-verbal communication, not usually with literary expression of mood and affect, but more often with icons: for instance :) for smile, or <grin>. Those who like to use voice and presence and non-verbals to communicate are not always comfortable.
Computer-mediated communication generally takes place on a neutral and level field. Feedback is quick; gratification is frequent. People who have-not can use free e mail from their public library on equal footing with e mail from a mental health program director. Rural areas without even cheap local phone service can use wireless, satellite links and Web TV. Third world countries, newly wiring, are installing state-of-the-art infrastructures.
People who experience mood swings, fear, voices and visions (People Who) have found each other on the Internet through news groups, web pages, and mailing lists. They have found support, mutuality, and advocacy for system change. They have found relief from the loneliness associated with seeming different, cutting edge medical information, and quick error correction of bad data. They have found a range of views about psychiatric disabilities, from iatrogenic to disease.
People Who have also found the mental health professionals online. There are a large number of professionally oriented mailing lists -- for instance about forensics, psychopharmacology, managed care, outcomes; some welcome People Who as a valued resource; some open the lists only to professionals.
Exchange with a mental health professional by e mail has a different tone from in-person exchange. The territory is neutral -- one's own computer screen rather than a therapist's private office or a mental health director's conference room. The Person Who can take whatever space and time is need to express a point of view, can set the context of the response by excerpting from a previous message, can readily provide supporting ideas and evidence that the professional might not have considered. Those in conversation are not limited by having to share a fixed amount of time, are not limited by having to stay focused on the topic, are not limited by the inherent power imbalance between professional and Person Who.
People Who dialogue with peers about work opportunities, and advocacy and rights issues, and about managing the situations that earned them a psychiatric label.
People Who dialogue with professionals about advocacy and rights issues, especially forced treatment; and about DSM diagnoses, prognoses, and psychotropic medications, and especially new treatments.
People Who read news groups like alt.society.mental-health, sci.med.psychobiology, alt.support.depression, alt.support.anxiety-panic, alt.support.loneliness, soc.support.depression.family. Moderated news group discussions stay focused. Many unmoderated people like to post to unmoderated news groups and opinions are apt to be polarized.
People Who visit the many mental health information web sites. Generally this is a one way exchange -- the visitor reads what is provided, perhaps makes a comment to the WebMaster. Some web sites provide chats and have some interaction. Some web sites are actually run on bulletin board software and have more interactivity.
People Who use Internet Relay Chat and other chat software and situations to join in synchronous exchanges with each other and with professionals.
Managed care companies and public health providers are beginning to use modem technology to provide patient management and support.
And then there are lists. There are lists for moods -- Walkers (melancholy), Pendulum (mood swings); for voices and visions -- Schizoph; for advocacy -- actmad; for safe support -- ClubMad; for spirituality -- MadSpirit, for working as a consumer mental health professional -- TwoHats, for state-specific issues -- mhconsumers-or. The exchanges are international, asynchronous, and vigorous. Some lists generate upwards of 100 e mail messages a day. Content varies from humor to dismay about psychiatric labels and public images to reviews of newly released DSM's to newspaper articles. Some participants post a reply to almost every message they read; some only read. Internet lists help to realize the slogan of the South African disability community -- "Nothing about me without me."
The MADNESS list states, "We bear witness each to our own experience with madness, to how we have been treated, and to the social consequences we have felt. We bear witness to the common vision and aspirations of people who experience mood swings, fear, voices and visions.
Lists are effective organizing tools. SAMHSA/Center for Mental Health Service organized a Walk the Walk: With Lives Touched by Mental Illness in May, 1998. A hundred Internet users planned ways to participate on a list devoted to the Walk, Australia and Canada planned parallel events as did some other United States cities, posters and symbols were devised and posted on the web, the message People Who desired to communicate was hotly debated and finally agreed, press releases were drafted and distributed, and it seems there is new momentum among those consumer/survivors wanting to make improvements especially in public mental health systems.
People Who who are politically active have found support for resistance to involuntary treatment, resistance to unconsented electro-shock, encouragement for Advance Directives, support for including independent grievance procedures in managed care contracts.
To yourself be in electronic dialogue on the Internet, use a search engine for the world wide web, and some of these key words: peoplewho, people who, madness, crazy, mental health, mental illness, ....