1998: The Madness Group - Year 5 Coordinator's Report

(I have posted as a separate page some list and page reports.)

I'm writing a memoir/history of these last five years, for a more general reader, and this is a section of that larger work.  The preceding section is the report of the first four years that I did last year and is still at this site.  This is less data oriented, more reflective, and much longer than my reports so far.  The citations in parentheses refer to a bibliography which will eventually accompany and which I am not posting.   This is long, about 4000 words.  LISTSERV reported that the MADNESS message announcing it was received by exactly 500 people.

1998: From The Madness Group to People Who Net

Persimmon summarized what happened a year ago,

For those of you who weren't there, it was extremely freaky, with flames flying on and off list, nasty posts targeting list members who had a tendency to fly off the handle, then protestations of innocence when they (predictably) lost it. When things settled down, there would be some new piece of sarcasm and the whole thing would start again. This went on and on. There were assumed identities, and incriminating tricks, anonymous off list e-bombs (resulting in technical screw ups for the recipient), other lists were pulled into the tech problems (or perhaps it was co-incidence -- it was impossible to tell). Then in a brilliant move, Sylvia pulled the plug and forced a resolution, which turned out to be an incredibly positive thing. ... My confusion and sense of helplessness from last summer certainly give an undercurrent of anxiety to list conflicts in general. (Blackbridge, 1998)

Between the time our September 1, 1997, reorganization was established and our fifth birthday, January 27, 1999, there has been flux and shifting and reshaping. A lot has changed, including my reporting style. I was intimately involved with everything that happened during the first four years and was able to detail the events in an orderly way. Previously I had underscored the group contributions. Now, as many others moved forward and I had only an overview, I wanted to recognize individual leadership but, because I held on to the pluralistic values of the consumer/survivor movement, without establishing a hierarchical precedent.

I was confused about my own role and what vehicle to use personally for the projects I wished to forward. I wanted MADNESS itself to be announcements, and messages no longer than one screen and I soon shaped a filter for what I sent forward -- URL's about whatever seemed interesting, conference announcements, an occasional quote or book title, and holiday greetings throughout the year which I posted early enough from California to be timely internationally. I limited how many messages and how often and, without review or endorsement, sent forward resources that I found. MADNESS messages went to the direct MADNESS subscribers and also to those subscribed only to the sub-lists nested under it. Most readers came to find this arrangement useful.

I wanted to use our infrastructure list, If-We-Build-It, to find myself a title and define my new role. The kind of discussions I needed did not happen. I started asking, waiting, deciding, implementing, and even though I was informing the subscribers, I felt as if I were acting unilaterally. I had always been intentionally non-exclusive. Now, of those I reached out to, many were passive, wanting me to lead, while others were contrary, and both were without suggestions for implementation. I felt uncomfortable with creating a small congenial group of advisors. And I needed a group like that to work with.

The glow of the reorganization faded quickly as alternate views about our direction used a federal educational event, Walk The Walk, as a vehicle for philosophical discussions about funding sources and collaboration.

Despite how the politics evolved, my own goal was process oriented, to build credibility and visibility for The Madness Group. In the fall, I had asked for MADNESS to be a Walk co-sponsor and had been so persistent that we were included and added to the formal lists of supporters. I liked seeing "The Madness Group" nestled alphabetically next to "National Alliance for the Mentally Ill." But objections on Act-Mad were strident and divisive, questioning the new structure, questioning my authority to decide what MADNESS or The Madness Group would endorse, and creating a volume and atmosphere on Build and Act which made those lists ineffective to use for guidance. I no longer had a list of my own where I felt comfortable being myself.

Led by Vicki Wieselthier, who was charting a path for MadNation, a protest to the Walk, the Million Mad March, was conceived and implemented. (Million Mad March was a phrase coined off-line and posted to Grrls. The original intent was to share a clever wording. The discussion went quickly from linguistic appreciation to Walking With to Marching Against. The blaze grew hot, and moved from the apoltical Grrls forum to Act-Mad and MadMarch.) By doling out  information about the Walk in very small and incomplete doses, CMHS weakend consumer inclusion and consumer coordination with the Walk and as a result helped the protesters.  As well, the protest was fueled by NAMI's international plan to weaken access to due process and civil rights (NAMI, 1997) for people they denoted as loved ones but who were violent, brain-diseased and decisionally impaired. Eventually several hundred survivors protested at Freedom Plaza, Washington DC, on May 3.(1)   CMHS has not responded (as of August, 1999) to my February 98 Freedom Of Information Act request for costs and other Walk details and is not in compliance with FOIA regulations.

Changes in staffing and priorities at St Johns led to an embargo on new lists and discontinued hosting of our resource files on their gopher site. Rainier Web Services quickly installed majordomo as a stop gap list management tool and Eileen Lopp rebuilt the library in a functional way. The Madness Group did its part to help St Johns by removing the four years of MADNESS archives. Almost concurrently, in January, CMHS adopted an honoraria policy (Act-Mad, 1997) which we had recommended and lobbied for. I was concerned about our ability to go on. It felt mocking that our situation seemed so very unstable while we gaining in authority.

Kathryn and I discovered we wrote well together and developed a brief piece on transformation which NARPA published in February (Cohan) and which was later quoted in the draft Surgeon General's Report -- which CMHS is editing or release in 1999.

I knew we needed a way to organize all the lists we were developing and wishing to develop and wanted a web interface for whole family of lists of The Madness Group. The lists no longer had the prominent space I had expected at MadNation. Vicki had started separate chats and lists to implement her own goals in her own style, which seemed to me more aligned with SCI. I began to read about web design, in March bought peoplewho.org (the obvious madness domains had been sold long ago) and became caught up in the enchantment of designing a personal page (Caras, 1998a). The pages for The Madness Group were much less fun, and remain simple, clear, and uncrafted. We still need a webminder.

We knew that the CMHS three-year TA contracts would be awarded again in 1998. I decided that rather than write support letters for applicants, I would submit my name as candidate for reviewer. But when the GFA was issued and I read about the interest in Internet projects, I posted my ideas to Act, changed my mind and withdrew my offer to be a reviewer, and with Eileen, agreed to partner with the application of the Clearinghouse.

That was a big political step, not taken lightly, and I realized that I had been shifting direction, that I could not stay neutral, that I lost purity by looking for funding, that by collaborating with the Clearinghouse I would automatically make enemies as well as allies, and that there was too much to do for me to keep managing without paid staff. I had been proud of being unbeholden and unaligned, outside of the competitions among the early leaders. Now no longer. Another big political step was the June publication in Psychiatric Services (Caras, 1998d) of an article I wrote expressing my dismay with the family advocacy strategies.

By now we'd established 14 more lists, more pages, we had lost the gopher at St Johns and Eileen had established a bare bones library resource. Eileen and Vicki had made chats available, and we were bulging with wanting to have our own hardware and software and staff. While working on our grant application work plan, I so convinced myself that we needed immediate funding and expansion that I wrote to other hosts for a home for The Madness Group (see Appendix) and to other agencies for interim help. CMHS said no; NTAC, NMHA, ATTAC and Boston University didn't reply. Developing the material was useful in focusing my thinking but there were no other results. I was impatient and discouraged.

In July, CMHS gathered twenty consumer/survivors in Boston where Boston University presented a two-day Consumer Internet Training to help us encourage more users of mental health services to use the Internet. Since most of us already had an e connection, being together was easy for us and hard for the BU staff. We expected a higher level of performance and more sophisticated materials  -- and the first day we behaved with impatience and disruption. We used the online computers at each of our desks to e mail to each other about the elementary quality of the teaching methods material we were hearing and seeing presented. The second day, which focused on Internet content, was revised overnight and better received. We left enthusiastic, Regina and Seth started MH-InfoHwy for us and we shared some early ideas and plans. The training materials BU contracted to develop have not yet been delivered and right now the list is idle.

In August we learned that NIMH was interested in hearing what kinds of research users of service would like to see funded and we developed and submitted a consensus document (Act-Mad, 1998).

MadNation continued to pull on the left reins to lead an agenda to create a "new" NAMI. I was attracted by Vicki's energy. I wanted to supplement myself with her vigor and skills for the Internet work --  but by the end of the year it seemed to me she was trumping just about every post I made, not only on The Madness Group lists, but all over the Internet where our paths crossed on disability and mental health and list management fora. In September Vicki decided to spin off MadNation. I felt saddened at our inability to collaborate and relieved that I would be less of a target.

Eileen and I had been using e mail attachments to pass an html file back and forth as we worked on our evolving ideas for the People Who Information Center we were developing. I posted a summary of the 12 months since the reorganization (Caras, 1998b) and the URL for what we had been planning.

My Internet service provider developed a local problem that wasn't fixed for several months, and instead of reading and writing mail in real time with a Unix shell account, I used another account to read and reply off line. The experience was very different, much less compelling, and allowed writing but not sending, editing, review time. Using Eudora instead of elm tripled the time it took to process my mail and halved my enjoyment. I was startled to realize that for most of the time, I had been having a very different experience from most subscribers.

In Boston, Kathryn and I had met with Jean Baker Miller, Wellesley Centers for Women, and been invited to present to the Jean Baker Miller Training Institute. We collaborated on a paper which we delivered there in October (Caras & Cohan, 1998). This led to an invitation for me to join the WFMH Women's Committee and for Kathryn, with Mary Montgomery, to follow up by starting the relations list, on the Lyris software test site that Eileen attempted.

The Madness Group was accepted as a voting member of WFMH, and I was invited, with Janet Meagher, to represent user interests on the newly formed WFMH Internet Advisory Board.

CMHS was forming a consumer advisory group for their Advisory Council and The Madness Group was asked to submit a nominee to the process committee which would determine how to select the group members themselves. I asked for volunteers, and selected Laura Ciprotti to represent us. Being invited was recognition of our growing voice. I also realized that after fours years of balancing, whether or not the Clearinghouse was funded, that I had made a political choice.

We were accepted by the Visionaries as a subject for one of their 10-minute video reports and would need to raise $25,000 to participate.(2) We were excited, and felt we needed hardware more. I tabled the decision about whether to accept until February.

Eileen had managed Act-Mad with a low-key style which worked wonderfully for a year. But in October it seemed not enough; a troll on Grrls was giving Kathryn grief, and Act-Mad in particular was full of lengthy angry unedited posts and the senders were challenging list culture. David Oaks had closed HealNorm and Vicki had chosen to moderate OACAF. The fall-out migrated to Act-Mad. Eileen responded by setting up a work group and some new lists on a Lyris test site. What was demonstrated was how the embargo of new lists at St Johns had been damming up so much energy that we had had this explosion. Eileen decided to at least set up a free version of Lyris whether or not we are funded.

CONTAC and NEC won the TA awards, and while I cursed fundraising and wondered if I'd gone astray from what we could really do, Joseph Rogers successfully lobbied for a third TA center. We were told we would be funded in November - a whole month of waiting for CMHS money - disbelieving, believing. We considered AMHA as a vehicle for a third center conference, since AMHA had replaced NMHCA at Alternatives 96. The Madness Group resources were pending and disorganized as we waited for a check to buy hardware and pay some staff. Eileen permitted two outside lists on the test site, recovery and relations, but the test site become inoperative for the next month.

I felt anchored by the dailiness of too many administrative tasks and on Sept 22 I announced on Build my intention to cut back by our fifth anniversary. I found others to administer two lists which I had owned. Mary O'Hagan and Steve McKenna took over WNUSP and Carmen Lee and Maria Maceira joined Richard Ratledge to adminster CINMHC. I watched my own participation on those two lists become more activist when I no longer felt the need to remain more neutral.

Subscribers are wonderfully responsive and resourceful when a specific need is put forward. Questions are answered, resources are found, letters are written. But there are so many projects to lead forward and not enough volunteer energy to implement them. I feel we have pushed even beyond the limit of what an only-volunteer group can do. Full-time devotion and paid staff are badly needed if we are to grow. I really don't want to administer; it is nice to not have quite so much to do. I am watching my attention move to a broader, more political scope.

In the meantime, I started to work on generic grant application documents which would also be the basis of incorporating documents. I announced our award and as a first step towards sustainability and reducing my own work load I posted an Internet appeal for contributions and time to our subscribers and our colleagues (Caras, 1998c). Two national and two local non-profits declined my request to be our fiscal agent; Irene Lynch permitted us to use Aleppos Foundation. The response to my appeal made me realize we needed grants to survive. I was becoming resigned to incorporating, almost eager to have more structured status, to be Big.

I tried to schedule my part in the three grant years to be congruent with my wish to reduce my daily involvement. I made a list of obligations and interests and made a start by turning down three trips to Washington, DC. I worked on projects that completed, and again become enchanted with web designing as I worked on the People Who Net index page.

Back in April of 1995 on a teleconference with Quinn Rossander, Joel Slack, Bernie Arons and me that Ross had arranged, Bernie had agreed to cost out Internet access for us. CMHS never did that, Eileen and I developed the figures for this application, and here we were 45 months later, funded. The check arrived at the end of January.

The mission of the Treatment Advocacy Center (TAC) makes our Internet advocacy urgent. TAC has joined with CAMI and California Assemblywoman Helen Thomson (Thomson) to turn the parity legislation debate into a revision of the CA forced treatment law and an initiative to lower the bar and reduce civil rights for people who experience mood swings, fear, voices and visions. California issues are spilling over onto the national agenda. Maxine Hayden has gathered materials which Vicki makes available at MadNation. Kathryn reminds me, for I don't have distance, that this is like the Internet climate that led to the reorganization a year ago. Next year, I plan to watch carefully for these signs.

I've learned a little more about political lobbying, spin, and social change. I've watched myself sacrifice accuracy for impact, gotten results, and been shocked out of naivete and into a values dilemma. As more and more I chart our path, informed by the group but deciding myself, it becomes harder and harder to separate our history from my own reflections. As Y2K looms, I am becoming philosophic, wanting to place this work in a large frame.

In March of 1995, when we were only one list, I wrote:

"I am considering incorporating our e mail list in order to apply for tax exempt status. The value would be to apply for funding, to give us credibility, and to choose certain goals and structures as part of the application process. The problems I am having are how to develop the bylaws and board duties so that control of the list remains with the subscribers and how to complete the exemption forms based on the current all volunteer, no assets situation.

"Our list is open and unmoderated, has currently 250 subscribers, 10% not from the United States, receives about 50 messages a day. My ownership style is to run all decisions by the list and to choose actions based on areas of agreement combined with minority opinions (so as to not get mired down in consensus for divisive issues). The success of the list is the sense of community, inclusion, ownership. I don't know how to have the responsibility that the incorporation laws want vested in a few individuals while maintaining this participatory mode. I want me, the list owner, to be an administrator for the subscribers, the polity.

"I know there are specific lists for nonprofit and list ownership, but I see a more fundamental, less technical issue of how to really level the playing field while working with existing regulations and a hierarchical system".

I am still unclear about how best to deal with this issue. It is a mental agenda item for the second half of this sixth year.

What seems to me a related issue is ownership of intellectual ideas. In the past year there has been some concept copying. The imitation is flattering and I know there is no real Internet privacy or security and I watch myself being more cautious about speculating and developing materials on line.

I'm also confused about the identity and image of the new resource we are creating. Using the word madness has served us well and fits the movement value of substituting words like crazy and mad for pathologizing diagnoses.

We've made "Nothing about me without me" recognized as the encapsulated message of the primary consumer and developed the omega/delta concept and image.(3) On the other hand, since all the URL's for madness had already been purchased, when I bought peoplewho.org and peoplewho.net, I started to create a different image. I'm not sure if it is cowardly or realistic to think we would have more possibilities with funders for People Who Net than for The Madness Group. I am heartened at watching the redundancy as I see lists and pages at many venues and I'm unclear how best to integrate this value for us. I am having a very hard time being patient while I wait for our new resources. When I close my eyes, I see the banner "People Who Net, home of The Madness Group." I am thinking about what color scheme and logo might create a consistent theme.

I have a leaning toward proof and science and, from the early days, had hoped to interest a researcher and develop a model to legitimize us with some scientific valid proof of efficacy. This hasn't happened, and now I know we are doing good, have anecdotes and testimony to our value. I'm letting go of that goal I've been holding. Finding health information and support on the Internet is now widespread. As Kathryn pointed out to me, we have been doing it; we know it works. Our ordinary struggles, our ordinary actions, are generating  cumulative heroic results.

Sylvia Caras, 1998

1. MadNation continues to provide resource material against force and coercion, most currently in helping California fight the enactment of parity laws that will fund more restrictive assisted treatments like outpatient commitment.

2. Our value here has been recognized by winning an offer from Visionariesto create a 10 minute web display and video for us (http://www.visionaries.org). Visionaries chooses a dozen groups a year for their short projects, plus six more for hour long films that are aired on public television. The chosen groups raise the funds to have the videos produced. Our video spot could be shown at local, state, national, and international conferences, could be offered to local television affiliates, and would promote the value of our electronic projects. It would enhance our credibility enormously to be linked to Visionaries. At the end of January, I regretfully turned down the invitation.

3. The letter omega is the symbol, in electrical work, for resistance. When used this way, the capital omega is pronounced ohm, the name of the resistance unit. The letter delta is a symbol for change. The Madness Group family of lists and works has a logo using these symbols and is combining the images with the words resistance, change, and transformation.

 

 

 

 

 

 

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