I've included how, from my perspective, this all came about, including within and at the end some quotes from e and snail correspondence and some documents from my own electronic files. If you were there and want to add to this, if you remember things I've forgotten, please let me know.

Sylvia, The Internet, and The Madness Group

1994-1998

Computers are electronic interpretations of the formal logic model. I learned Boolean in 1955, programming in the 60's, acquired a hand-me-down p c in the 80's, and by the 90's, when I heard that a federal technical assistance grant was to be awarded, bought a new computer and my first modem, learned some telecommunications vocabulary and software, become Internet connected via a free Santa Cruz site, and asked for CMHS support.

There were already consumer oriented BBSs in place in New York City and Washington State. There were news groups, but moderated misc.handicap didn't approve mental health advocacy messages for posting. Walkers and Pendulum were on line. While remembering I want to switch verb tense. I am back there in time as I write.

At each phase of the consumer/survivor telecommunications agenda, as NEC continues to not carry the electronic information initiative, I become more knowledgeable, enthusiastic and discouraged.

Not being alone was what I needed; Wayne writes to me:

Date: Tue, 7 Dec 1993

From: bipolar@henson.cc.wwu.edu

I am interested in attempting to develop a mental health 'presence' on the internet. ... I was informed of your efforts by Buddy Ruiz. ... I would very much like to connect ...

I write to Jackie:

Jacqueline Parrish
CMHS CSP
Dear Jackie,

I just finished reading Sproull and Kiesler, Connections : new ways of working in the networked organization and the book has sparked several ideas for possible future research projects. The work the book reports is based at Carnegie Mellon University, and has already received some support from NIMH.

I have enough electronic knowledge to have been inspired, to have the vision, but a project needs a person like these authors, technically savvy, as a principal investigator. There are sociological and technological variables to measure as well as psychological and medical ones.

I don't have the funding source connections or the project development expertise to go forward with this, but I sure wish you would pass the ideas below along.

...

People Who sent its first Internet message on January 27, 1994,  to 17 people. Subsequent input was manually organized and reposted using the Unix mail command and a manually edited alias. People Who sent its last message to 56 people on April 16, 1994, when it was converted to ThisIsCrazy on majordomo@netcom.com. Over 79 days, People Who sent 35 digested messages. These messages are now archived on a compact disk.

Cyber-space compresses time. The People Who list is 21 days old and I get a request wondering if we are still accepting subscriptions? The seeds of e mail information sharing, consensus, support, and advocacy are in the early People Who messages. Some of these early e mails went to John Allen, Sue Brown (who works with WID), Bob Bureau, Judi Chamberlin, Sally Clay, Brian Coopper, Bob Corey, Dan Fisher, John Ihler, Tom Mitchell (Community Access BBS Sysop), Darby Penney, Andrew Phelps (who later collected enough e addresses so I could start the California list), Ian Pitchford (InterPsych creator), Quinn Rossander, Mike Smith (who set up an ftp site for us), Wayne Smith, Rosemarie Ventura.

In the early messages as well were the seeds of problems, why we had not been able to organize as a unified voice, beginning with what to call our e mail presence. The short list included ThisIsCrazy, PeopleWho, Folly, and Madness.

Ian Pitchford started the Psychiatry list which grew into InterPsych and GlobalPsych. Level field messages were exchanged between professionals and those who might be their patients. Even though I couldn't redress the power imbalance in person, I began to write e mails with the authority of my own experience, and that of the others I was meeting. I posted to the brand new Psychiatry discussion the Dendron distributions about forced ect and Lucille Austwick. I received angry responses and defenses and wished that the focus were less on me and more on the work. And I was uncomfortably envious to see Ian's work expand exponentially while we People Who weren't reaching critical mass.

Sally Clay and I have many exchanges about movement philosophies, participation, and policies.  We work with the WA BBS and explore those possibilities, arrange to meet in person but don't, and start dialogues with the professionals on line.  On 25 February, I write her "I do not plan to make this my career, but am excited and proud of the birthing," and on 9 March " ... it is remarkable how all of this is taking shape.  It seems to have a life of its own."

A helpful e mail from Bernie Arons cheers me, I find out about list management software, implement it, and post:

I have accessed a computer program to handle the People Who messages. I am doing this by creating a new list named ThisIsCrazy. Any message you mail to ThisIsCrazy-L@netcom.com will be automatically mailed to every subscriber. Please note my new address; I switched accounts so I could automate our list.

ThisIsCrazy sent its first majordomo message on April 16, 1994, to 56 subscribers. ThisIsCrazy sent its last message on November 3, 1994, to 108 subscribers, when it was renamed MADNESS and moved to St Johns. These messages are now archived on a compact disk.

In October of 1994 Bob Zenhausern reaches out, and we move the list to St Johns to join a cross-disability community he is creating there. I am so enthusiastic that I develop typing injuries while establishing this resource and gopher. I feel life has been unkind, just when I seem to have found my place, to slow me down. I use the Internet to learn how to manage my new health hitch, and type less.

In the meantime, the National Empowerment Center has started a list (Telecom-Agenda, on April 20) and a gopher, and Dendron has become an active Internet presence.  But the NEC gopher didn't properly attribute the files copied from ThisIsCrazy's ftp site and NEC was reluctant to give credit to our list. It took too many months and the intervention of the National Writers Union mediator to correct this infringement. Telecom-Agenda did not thrive.

I am unsuccessful in interesting the Departments of Rehabilitation in California and in DC in computer literacy as pre-vocational, or in getting Hewlett Packard or Ben and Jerry's to donate a scanner, or in receiving an NII Award for which I apply. At the same time I am successful in publicizing our work: there are two stories in the Washington Post, and a quote in New Scientist. I begin to make presentations, and realizing the need, start CINMHC, a California-specific list. I see from my own first messages my style of inclusion and peer management.

I am fascinated with my fascination with e mail and use words and Word Perfect to try to get at why. By March of 1995 I think we need funding and that the way to get it is to first incorporate as a non-profit. I like the challenge of filling out the forms as an e corporation. I apply for a tax identification number, but ultimately don't go forward because I want to be political and too much lobbying violates the United States tax-exemption rules.

I know that all of the postings are archived at St Johns and I think it would be interesting research to study our discourse. I want what we are doing researched, evaluated, turned into data to back up funding requests. I draft a proposal that goes nowhere.

My own next challenge is giving oral presentations. In grammar school I was so afraid to speak out that I tried not to raise my hand to be called on. In high school I trembled even more, bright mathematician sent to the back of the room to sit alone. As a suburban matron I lost my voice when I once introduced a speaker. In Santa Cruz, during an award acceptance speech it was only when I afterwards watched the video that I saw what a nice job I'd done; I hadn't been there at all.

But Jean Campbell in particular helped me to realize in-person networking was what would advance electronic advocacy. Nancy Callahan introduced me to Frank McGuirk, who explained to me about the power of including real people's stories, and I made my first presentation for WICHE in January of 1995. Though my style was stiff, the quotes from Internet users still deeply touched the hearts of my audience of statisticians. I was invited by other groups, wrote out and read my ideas and anecdotes, and finally took some speech lessons from Wilma Chandler. I began to be more at ease, to trust myself to be a little more spontaneous. And to wonder about how to balance travel and preparation with Internet participation and reflection.

The NMHCSH Clearinghouse funded several of us whose answers to conference Calls for Presentations were accepted, and reported in The Key about what we were doing.    Joseph Rogers himself used the list to shape the direction of some conferences they organized and the Clearinghouse held a national teleconference on Internet resources.   Real dollars supporting the growing virtual community helped knowledge of the resources spread.

As feedback, I'm told that presentations would be more effective if I tell something about myself and I begin to include these words:

I've been in six mental hospitals, three times by force.
I've been chemically restrained, electrically shocked, and had rights deprived.
I've had my deficiencies explored by therapists. I've lost friends and have an uneasy relationship with my family.

The loss of dignity was the very worst for me.
I was handcuffed and taken off in my nightgown, without glasses or shoes or underwear or money. My home wasn't locked up, and was looted while I was locked up without even access to a free phone.

I have become a rights advocate, in addition to all the other reasons, to deal with my outrage at how I was treated, and to mourn the loss of my innocent trust in democratic protections of citizenship.

I ask the California Department of Mental Health, "How can we clients link with the California health network <cahwnet.gov>?" and DMH replies, "The DMH and HWDC computer systems and Internet connections are limited State resources. They can only be used and accessed to conduct State Business."

I turn a NAPAS presentation on Owning into an InterNic News article,  report on electronics to WFMH, and publish about CINMHC. In May of 1996 I reluctantly switch to Windows 95 and in October of 1997, even more reluctantly, buy a PPP Internet account. But by the end of 1997, the Internet was a less safe space, e mails to Paolo at SAMHSA are available through FOIA, peer management has failed, and I feel executive decisions are required. I put the MADNESS list on hold and we soon reorganize into The Madness Group.

I think because I chose CINMHC as the subject for a presentation and for an invited article in Behavioral Informatics Tomorrow I become fiercely protective. Despite the generosity of San Francisco State and the political value to hosting the list in California, when the list is threatened during what came to be called "summer bizzarro" I move it to St Johns to use the more powerful software. Sue Poole later summarized,

A troll came onto the (former) MADNESS list. He/she/it subscribed under various and sundry names and accounts and proceeded to piss off everybody, first with floods of deliberate flame and then with garble and word salad...Or maybe someone else produced the word salad stuff. We couldn't decipher who was posting what for a while...

In the middle of August I begin to use software management tools to handle the troll attack. I am not successful. Sue continues,

This troll was like a mutating virus. Couldn't be unsubbed or blocked because he/she/it kept popping up as someone else. Sylvia was at wit's end trying to figure out who was posting what to whom as the headers were impossible for one person to trace without devoting entire life to it.

10 days later, I'm aware that there is a large amount of off list correspondence going on which may, or may not, affect MADNESS itself. I post

This has been hard for me and I feel like I wasn't doing my job the last few months. I've been (traveling and presenting) without access and not reading and returned twice to problems. I didn't want to act on someone else's complaint without knowing myself what was happening. And it seemed overwhelming to go through the logs. I appreciate those of you who wrote me off list to insist there were indeed problems and I needed to do something. I'm now home for a month and will keep a closer eye on what is happening.

Old timers here know that I have not wanted to intervene in group dynamics in any direct and arbitrary way. I certainly didn't want to bar any people who experience mood swings, fear, voices and visions from posting here. I feel strongly that we must accept each other if we want the rest of the world to accept us.

MADNESS still needs oversight, and I guess any open list always will. There is so much list turnover, a handful of sign ons and sign offs every day, that maintaining tone takes regular attention.

Controls are imposed, things quiet, but, you know from reading that the list is doing nicely but my own mail is very odd
.

And finally, on the last day of August,

This has forced me to do what has been needing for several years, some reorganizing. I was resisting. Fortunately, it's convenient now. The Internet has changed in these four years and MADNESS hasn't. It's time. And now that I've decided, I'm grateful to have been nudged over the edge by some weeks of bizarre mail, bizarre.

I have reconfigured MADNESS to be a news and announcement list. Only I may post to it. I'd like to see this become a super-list, and nested under it a list that allows the free and far ranging discussions MADNESS has had in the past with an action orientation (ACTMAD), and another protected list, support for People Who who don't get they want elsewhere, who maybe aren't so fond of biopsychiatry (CLUBMAD). St Johns will host these lists.

My decision was ill received by some:

I can state clearly that I consider your actions to be both insensitive and irresponsible.

Eileen explains the mini-list, and summarizes what happened next:

Irene sends mail to a group of MADNESS subscribers (something of a what do we do now? letter).   Sue and I jump in and start talking about getting ACT-MAD off the ground. Sue doesn't feel she is in a position to manage the list (ACT-MAD), so I decide to take it on. Others are participating, but no one is _doing_ anything, there is encouragement from most in the group that I go ahead with it.

Meanwhile tempers flare, netiquette is violated, the Web Minder resigns.

But others quickly follow Eileen's lead in starting Act-Mad and setting up its web page. Now there are almost a score of lists, a domain and the MadNation web site.

We are currently working hard to organize a presence at Freedom Plaza on May 2. CMHS is planning a Train theTrainers workshop late in 1998 to further empower consumer/survivors with computer and Internet literacy. I haven't sufficient distance to assess my own impact. On the one hand, I expected our Internet lobbying to be more politically powerful more quickly. On the other, I am still startled at the personal authority I now have. I like to believe it is all of us together who have made a difference. We are not yet at critical mass, and as we grow stronger and surer in advocacy, those who want to distance themselves from our genuineness continue to become more oppressive.

(c) Sylvia Caras
January 26, 1998
Santa Cruz CA


Chronology of the family of MADNESS lists and works and ancestors

There would be no chronology if it weren't for the subscribers, the readers and posters, the givers and comforters, the organizers and disbursers. Without you lists have no value, no power. Below is an attempt to document only a certain kind of contribution to the MADNESS family of lists, and certain related events. Omitted, for lack of dates, are the Community Access BBS in New York, the Maine statewide system, the many news groups, and the AOL mental health activites.

1989 CybrWay'n envisions networking
Jerry Fordyce and Marianne Neff-Daniels envision WA statewide system. PIE goes on line.
1991 WA state receives grant for BBS and sysop Jon Ihler launches CA-BBS. CMHS includes Consumer BBS concept in TA RFP (Jackie Parrish). NEC includes Catherine Odette's BBS suggestion in their BBS proposal. PA and others also include electronics.
August 1992 Walkers by Dave Harmon
March 1993 Pendulum by Ed Arnold and Gordon Joly
April 1993 alt.support.depression by Gard Abrahamsen
May 1993 Sylvia uses e mail through Deep Thought, a free Santa Cruz Internet provider.
September 1993 CMHS CSP refuses to agendize electronics at grantees meeting
December 1993 Buddy Ruiz, CMHS, introduces Wayne to Sylvia
Sylvia receives her first e mail from Wayne
NEC snails People Who proposal to some.
? Schizoph, later owned by John Carlson
January 27 1994 Sylvia stops waiting for others and sends first People Who Message. Sally Clay provides active support
February 14 1994 InterPsych by Ian Pitchford
April 1 1994 NEC decides to not create BBS
April 17 1994 ThisIsCrazy-L on majordomo at netcom.com
April 19 1994 NEC starts Telecom-Agenda on majordomo at world.std.com
Spring 1994 ThisisCrazy ftp site
NEC gopher
Dendron on majordomo@efn.org
Sylvia snails ThisIsCrazy info to c/s/x sources and newsletters.
November 3 1994 MADNESS by invitation from St Johns
Oregon opens, then closes, a BBS
November 11 1994 NARPA resolves to use e mail for Board business.
1st Q 1995 alt.support.depression.manic by Scott Milliken
Jan - June 1995 MADNESS Technical Owner Chuck Coker
June 8 1995 - September 16 1997 MADNESS Web Page by Patrick Burton
mid 1995 - Sept 15 1997 MADNESS Technical Owner Kieu Vu
August 1995 PSYCHRC file URLized by Jason Rasku
September 1996 *Mouth* grants permission to use NAMWM logo
last half 1996 Omega logo conceived
3rd Q 1996 Gopher reorganized by Persimmon
1996 OzMad by Ria
1996 MadBest by Ria
Jan 31 1997 TwoHats by Scott
April 1997 OzMad to SJU
May 6 1996 CINMHC by Sylvia
November 1996 ClubMad is conceived
March 1997 ClubMad.org is stillborn
SJU MADNESS page by Patrick Bruckart
July 1997 WNUSP by Sylvia
WFMH-SCL by Sylvia
September 1997 Act-Mad by Eileen
ClubMad by Robyn and Wayne
MadGrrls by Kathryn and Vicki
Mad-Zine by Vicki
Mad-Adhoc
If-We-Build-It
GoneMad by Sylvia
MHConsumer-VA by Patrick Bruckart
MadNation.org by Vicki
IRC by Brooklyn
www.rainier-web.com/actmad by Eileen
November 1997 www.MadNation.org by Vicki
Mad-GLBT by Ria and Jason
MadMarch by Sylvia and Kathryn
1998 MadSpirit by Dennis

Additionally, there have been presentations at conferences about electronic advocacy and support, media coverage, material published in response to current events discussed electronically, responses from CMHS and some states, and a wealth of material collected on the MADNESS gopher.  The NMHCSHC provided funding for six presenters.


Edited Primary Source Material

==========

From: "Bernard Arons CMHS" <BARONS@AOACMHS1.SSW.DHHS.GOV>

Sylvia--Your letter to Congressman Farr concerning E-mail to CMHS has been referred to Secretary Shalala for response and will likely get a response eventually by mail. Meanwhile, since I am getting somewhat more accustomed to INTERNET myself, in part due to your urging and your proposal of 22 September 1993, ...

Also, as I understand it, mail that does not get through does not get acknowledged or saved, so it is worth saving mail until you are sure it has gotten through. HOPE THIS GETS TO YOU

==========

Subject: Re: archives

To: DRZ@SJUVM.STJOHNS.EDU (Bob Zenhausern)
Date: Fri, 14 Oct 1994 09:41:01 -0700 (PDT)

In the message of Bob Zenhausern:

> I have recently subscribed to thisiscrazy and find it fascinating and useful in my career as a psychologist. Are the archives of the list kept and can they be searched via keyword?

You message is timely. Archiving is not yet in place and we have discussed it some. I have held off for several reasons, some being cost and practicality. Your doing it would take care of that piece and I would be very grateful.

> If you are interested, we can talk more about it.

What we need to talk about is who would have access. I have always had some concerns that posts sent in one mood might be embarrassing read later, or by others out of context.     Next is the lurker/professional/research questions which is being discussed on several lists.   My top-of-head rule would be that the archives would only be accessible to list subscribers. It's of course easy to subscribe search the archive and unsubscribe, but there's a little screening that way.  We do not want to control subscribers or postings, except by group pressure. I am unwilling to formally moderate. So I'm having a little conflict between a policy of openness in the present and preserving the past.   It's to the list's advantage to archive. Many have asked for that. We could do statistical research. I'm convincing myself. And it would be wonderful to have you be doing it, not me. I'm having ongoing problems with netcom.   After you and I have come to some agreement, I would want to submit your kind offer to the list and go forward if their is a super-majority in support, and allow those who disagree to unsubscribe before we start.   Also, several subscribers have some postings on disk. Could we collect, collate and include that also? And I have in my computer most of the 3 months pre-ThisIsCrazy when I managed a list manually, before I had access to majordomo.

I look forward to our discussion.

==========

List Management: MADNESS/NEC Letter of Agreement

Background

Last July, I advised the National Empowerment Center (NEC) that they had improperly cited ThisIsCrazy in the files that had been copied to the NEC gopher. (ThisIsCrazy was the name of this list before we moved to St Johns last November). Though I requested several times, I was unable to get NEC to properly and completely correct the citations, even using federal channels.   The National Writers Union saw this problem as copyright violation, and urged me to accept their help. But they advised me that throughout the negotiation, to show good faith, that I should remain silent about the progress of the process. I for MADNESS, and Dan Fisher for NEC have just signed the Letter of Agreement below. Bob Bureau corrected the 27 of 90 files from ThisIsCrazy that in December were part of the NEC gopher. The National Writers Union Grievance Officer has written to the SAMHSA Inspector General that the issue has been satisfactorily resolved.  At the request of Bob Bureau, Peggy Clark at CMHS/CSP has been copied.  I owe thanks to Steve Turner, Western Region Grievance Officer, for guiding me, with care and skill, to a successful close.

*****************************************************
Letter of Agreement between the MADNESS Service and the National Empowerment Center

In the spirit of the Internet, the MADNESS service, formerly known as ThisIsCrazy, and the National Empowerment Center

agree to strongly support the cooperative use and distribution of information. Furthermore, fairness, ethics and copyright laws also require that when the offerings of one of these two services are utilized by the other, that the originating service, plus the listing service, if different, must be credited fully by citation, including the names of each other's services. MADNESS and the National Empowerment Center agree to respect that convention and imperative in all Internet postings, and insist that all who already have, or will in the future acquire postings for use from ThisIsCrazy/MADNESS, MADNESS' Gopher/FTP, or the National Empowerment Center Gopher/FTP observe the same requirements.

There are several forms of citation which are currently recognized. One acceptable citation format is an interpretation of A.P.A. Guidelines found in _Electronic Style: A Guide to Citing Electronic Information_, by Xia Li and Nancy B. Crane, (Meckler, 1993). Another acceptable citation format is the _National Library of Medicine, Recommended Format for Bibliographic Citation_, (Karen Patrias, 1991, new edition forthcoming 1995). MADNESS and the National Empowerment Center agree that it is high standards which are important, not the design source.

By signing this letter, MADNESS and the National Empowerment Center agree to use full citation format when quoting or redistributing materials from electronic sources of information. MADNESS and the National Empowerment Center further agree that material first posted to one electronic site, which is to be printed in hard copy, captured for storage in a gopher/FTP site, distributed via computer disk, or any other format, will include a detailed source citation,if the header is stripped, identifying either ThisIsCrazy, MADNESS, or National Empowerment Center Gopher as the originating or listing site on the Internet. If a listing service is cited, the originating site also will receive full citation.

It is agreed that any postings originated or listed by ThisIsCrazy/MADNESS, and transferred to the National Empowerment Center FTP site prior to the effective date of this agreement, will be brought into conformance with this agreement if and as moved to the gopher. In keeping with procedures which led to this agreement, any such postings (or, at least, pointers thereto) will be E-mailed to Ms. Caras for review after correction and before transfer.

Signed, January 6, 1995: Sylvia Caras, for MADNESS
Signed, January 9, 1995: Daniel B. Fisher, for The National Empowerment Center

 

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