New Community Networks
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Wired for Change
MADNESS is a communication and information service for "people who experience mood swings, fright, voices, and visions." It is an electronic distribution list - or listserv - that allows anybody with an e-mail account to easily send messages to and receive messages from the entire group. In the words of Sylvia Caras, "The list is used to further low-cost exchange of information to serve cohesion and mutuality, and support increased power for 'people who' [experience mood swings, fright, voices, and visions]."
According to Caras, who started the listserv, "There is an intention to involve users of mental health services in their services and to have users directing their own care." This intention is much in keeping with other "rights movements" such as the civil rights and women's movements in that people are requesting equal consideration under the law as well as the right - as citizens in a democratic state - to participate with respect and dignity in the decisions that influence their lives.
Participants in this listserv are often participants in the C/S/X movement, for consumers, survivors, and ex-patients. The discussion on the list ranges from the immediately pragmatic to broad philosophic and political visions. Although the listserv discussion is unmoderated and uncoordinated, there is a strong coherent foundation of shared experience, values, and respect.
There are questions on the list about specific drugs: One participant wanted to know, for example, whether Ritalin is ever prescribed for children. A list of all medications was posted along with the ironic comment, "Certainly takes a lot to keep us in line.<g>" One participant asked why medical patients have telephones and psychiatric patients usually don't. Besides asking questions and raising issues, many people offer their own "war stories" of actual situations. One participant had investigated the use of "seclusion orders" at a state hospital and found that their use was specifically forbidden by the Joint Hospital Accreditation Manual for Psychiatric Hospitals. This participant pointed out that knowing the rules and regulations that govern hospitals can be very useful to a patient in protecting him or herself.
Although it has not been universally so, mental patients have historically been incarcerated, shackled, drugged, operated upon, and shocked. Even with today's greater emphasis on rights, self-help, and respect, "almost all current activity and advocacy ... is supported by local and national mental health systems and associations, and by grants," according to Caras. Caras and others believe that this approach is too indirect and "dulls the philosophic edge of the grass-roots user movement" and has high administrative costs. In addition, electronic distribution is more immediate and far less costly: "There is no postage, no envelopes, no address labels, no folding" (or copying)! Some participants have introduced the idea of coordinating efforts to address common concerns. One participant suggested a demonstration project in which policies and procedures would be rewritten to replace the concept of involuntary treatment.
Although Caras is enthusiastic about this media, she realizes there may be some resistance to the technology. Some of the audience that she is trying to reach feel that radio and television may send "targeted messages" or speak directly to them. Caras feels that the nature of computers is interactive and "at the control of the operator" and hence "the medium may be acceptable."
Judi Chamberlin, an active participant on MADNESS, and an associate at the National Empowerment Center in Lawrence, Massachusetts, posted an eloquent case for psychiatric survivors that appear in her speech "The Right to be Wrong" (1994).
For all the people confined in psychiatric institutions against their will, for all the people confined in group homes and congregate living facilities, for all the people confined by the internal walls of forced drugging, for all the people confined by the lost memories and broken brains of electroshock, I say: We will not wait! Our struggle is being fought today, on many fronts, by many brave people, who want nothing more than the chance to live our potentials, to take chances, to succeed, to fail, to try, to have opportunities, to make mistakes, to achieve, to change our minds, to be foolish, to pursue our dreams.
I hope that this information is useful to you. Please feel free to send me (Doug Schuler) your questions, comments, and corrections. I will try to keep the information in these pages current.