1998: The Madness Group - Year 5 Coordinator's Report
(I have posted as a separate page some list and
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,
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
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
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
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
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.