Advocacy on the Internet: The CINMHC List
 
                          Sylvia Caras
                                
     Abstract:  The CINMHC (California InterNetwork of Mental Health Clients)
     List is the electronics and communication portion of the CNMHC
     (California Network of Mental Health Clients).  It runs on LISTSERV at
     St Johns University in New York State.  Most subscribers to CINMHC
     believe in a disability rather than a disease model of behavioral
     symptoms and look for accommodations;  alternatives to traditional
     services; options that are voluntary, informed, and not contingent; even
     the option to make a mistake, fail, try again on the path to independent
     living.  Globally, there is a notable trend toward including the  voice
     of the actual service user in all levels of behavioral health care: 
     planning, implementation, staffing, evaluation, research.  The slogan of
     the South African disability movement says this compellingly: "Nothing
     about me without me."
 
Behavioral  healthcare for people who experience mood swings, fear, voices and
visions is most effective when the care is unified and focuses on the whole
person.    Client(1) self-care is an adjunct to care from others.  
Involvement with self-care moves through stages first of accepting that there
is a situation, then talking with others, and ultimately becoming political. 
Some " ... feel an urgency to set things right ... because they ... have been
so deeply wounded   and informed   by their illnesses that they cannot do
anything else."(2)  Advocacy for self and for peers helps clients stand tall. 
Feeling good about ourselves is an important part of our recovery.
 
"The CMHC's in the U.S. have chosen the medication management and entitlement
model of care because 'that's what the Fed's pay for.'  Stabilization and
maintenance are the goals.  Such strategies promote and extend chronicity."
(3)   But for healing, for comprehending the meaning of the experience; for
transforming "disease" into understanding, for these deeper, fuller outcomes,
knowing how the personal  is also political reconnects the client to
community.  Biomedicine's model of healing isolates.  But, "inner healing,
citizenship, freedom from coercion, and hope were the most important outcomes
of mental health services to consumers."(4)  Internet communication can
foster recovery in an electronic community.
 
"A conservative estimate is that the world's storehouse of information doubles 
every five years.  At this exponential rate, the total amount of information
in the world increases a thousand-fold every fifty years!  Thus, you are
trying to cope with a global information environment that is about a thousand
times more complex than what your grandparents were facing at your age." (5) 
Including people who experience mood swings, fear, voices and visions when
this raw information is transformed into knowledge will facilitate the
accuracy and efficacy of the product.  For "in a world of nearly infinite
choices, information about the choices is more valuable than the choices
themselves." (6)
 
On the other hand, policies that insist on more and higher standards of
confidentiality for psychiatric clients and their records than for other
health consumers and their  records add to the segregation and shaming of the
people with these records.  Instead of protecting us, include us.   Advocates
are proud of their work for civil rights and better services.  They usually do
not want to hide behind anonymity.  
 
Informatics by its very nature erodes privacy.  There is so much data in so
many places that it is less and less possible to secure that data.  Rather
than resist this reality, we need to learn to understand that much information
about us is public, and to develop strategies for ensuring that the
information is accurate and not harmful.  
 
The ability of an advocacy movement to support a variety or personal styles
and points of view may depend on network confidence    internal and as
perceived from without  -- on networked sharing of risk, on network trust, on
network credibility.  Interactive mechanisms that maintain network confidence
may replace hierarchical and authoritarian relationships.  This kind of
limited responsibility that disconnects involvement and action from ownership
may generate more effective advocacy.  Networking may stimulate the continuing
emergence of new combinations and ideas and strategies. (7) 
 
Until recently, the political movements of people who use or have used 
mental health services had no dependable national  source of news, no
organization, no directory of resources, no way to grow to a coalition.  But
now, in this information economy, we use the Internet to fill that need for
dissemination.  And we're learning the importance of mastering data overload. 
 
The CINMHC (California InterNetwork of Mental Health Clients) List is the
interim electronics and communication portion of the CNMHC (California Network
of Mental Health Clients).  The focus of the e mail discussion list,  hosted
by St Johns University, is California specific, to discuss California
legislation, California county behavioral health implementations, issues with
local Mental Health Boards, self-help in California, managed care in
California, and other related topics.   The list was formed in May 1996 to
supplement the state-ordered restructuring and decentralization of CNMHC. 
Since around 15% of all the Internet sites in the world are located in
California, (8) it was no surprise that a score of California clients were
already e mailing.  These were the first participants.  I originally arranged
with San Francisco State University to host the list, which quickly grew to
some 80 subscribers.  In the fall of 1997, I moved the list to St Johns to
join the several hundred disability lists hosted there and to take advantage
of LISTSERV, the powerful software used by St Johns.  St. John's has become
the number one academic site in the world with respect to LISTSERV capacity
with more than 150,000 subscribers and an output of 600,000 messages daily
from about 600 lists.(9)
 
CINMHC membership has remained stable.  Many subscribers have met face-to-face
or will meet at regional and statewide conferences.  As with most self-help,
there are no costs to participants.   SFSU donates the host service;
subscriptions are free; administration is volunteer.
 
     Edna has recently gone online.  At first she had been highly
     reluctant, being afraid of computers, the unknown, etc.  But after
     seeing many messages downloaded and faxed to her, and working on
     managed care statewide, she started to feel she was missing
     something important.  Now she is virtually emerging from isolation
     and at the same time drawing people to support her in her rather
     desperate personal struggle.  It's like a light has gone on in her
     life. 
 
So writes Andrew, a long-time community organizer,  about our colleague.
 
He continues, "Dialogue has always been a problem in the clients' world.  The
rise of open-and-free discourse by way of the CINMHC has greatly expanded the
ways we talk to each other.  In this way we are upgrading our process
seriously, thus self-help too."
 
Claiming a political voice is a part of healing for many who have been shamed
and stereotyped by a behavioral illness or by the care they have received.  
In the 60's, mental health clients joined other human rights activists, and
ever since have been  lobbying against violations of rights and for true
informed consent.  Organizations, formed in each state after the federal
Protection and Advocacy Act was passed in 1986, became allies.  CINMHC shares
this orientation towards action as an important part of  reclamation, of
rebuilding esteem.  
 
Maria, a newly elected CNMHC Board Officer, writes, "The list has changed my
life.  I have always had trouble with leaving my house, and now when I want to
stay indoors I'm not all alone. It truly is miracle, I have not been the same
since."
 
Electronic support is available from many other lists and news groups, in
particular Walkers (melancholy), Pendulum (mood swings), Schizoph (voices and
visions).  Subscribers to these lists tend to accept a biological
understanding of their symptoms, share information about pharmacological
interventions, and support each other with suggestions on minimizing drug side
effects and on other coping strategies.  Ivan Goldberg, a
psychopharmacologist, Internet trailblazer, and namer of "Internet Addiction
Disorder," posts to Pendulum and will answer general questions.  Suicide and
crisis messages on the support lists evoke immediate offers of electronic
availability, telephone calls, and occasionally, notification of local
authorities.  National and international electronic advocacy is available in
several places, in particular on MADNESS and HealNorm.   Pennsylvania has a
statewide list; New York is forming one.  The World Network of (Ex-)Users and
Survivors of Psychiatry is online.  The WFMH-SCL list is preparing for the
WFMH biennial congress in Santiago in September 1999.
 
CINMHC stays sharply focused on California issues so as not to overburden
subscribers with the large volume of mail found on some of the other lists
(upward of 100 messages a day).
 
Most subscribers to CINMHC believe in a disability rather than a disease model
of behavioral symptoms and look for accommodations;  alternatives to
traditional services; options that are voluntary, informed, and not
contingent; even the option to make a mistake, fail, try again on the path to
independent living.
 
The quality of all the lists, whether advocacy, support, or camaraderie, is
very much like the ambience at in-person meetings:  it varies with the
convener, the site, the attenders.  Electronically, all who want to be
included are, much more quickly, and those who prefer to remain observers, or
what the Internet affectionately calls "lurkers," may readily do so.  The
Internet self-corrects: misinformation is quickly challenged.  First hand
experience is valued; contradictory and complementary coping strategies are
available for sampling.
 
But Danish researcher Bille-Brahe notes: "(T)he frequency of suicide attempts
among children are increasing, and that suicidal behavior is shown by younger
and younger children." (10)  In Finland, at the WFMH Congress, she spoke to me
of her strong concern that children be prevented form accessing how-to
information on the Internet.  Her solution would be to ban such information
from everyone.
 
In July, I asked CINMHC subscribers for input about their own experiences for
this article.  (All quotes and attributions are with permission of the
authors.)  Carmen Lee, Chair, Stomp Out Stigma, replied:
 
     I can put out a personal problem or an organizational problem and
     receive experienced, caring feed-back almost immediately. 
     Self-help, in my opinion, is the ability to utilize available
     opportunities and resources to increase knowledge and develop more
     support - all of which are necessary factors in acquiring a sense
     of "wellness."  My "self-care" has improved by being able to "take
     charge," giving myself more options and deciding for myself what I
     want from the Internet, what topic I want to get involved with,
     what I don't want to be involved with, interesting and useful
     facts, a sense of unity and a feeling of being a part of
     something, someone ... non-isolation.  This Internet list also
     affords me the necessary information, both state-wide and
     nationally, about what's going on with other consumer groups,
     legislation, and other important information that I need in my
     work as Chair for the "Stamp Out Stigma" educational program.  I
     would be "lost" without my daily, pleasurable "ritual" of logging
     on in the a.m. and retrieving my e-mails from the CINMHC, as well
     as giving input and support.
 
This year, clients discussed four advocacy threads with great attention:
 
1.  Assembly Bill 482 asked the California legislature to treat psychiatric
records uniquely by broadening family access to behavioral  records, even over
the patient's opposition.  Clients and rights advocates opposed the
legislation, and using CINMHC, developed amendments and a CNMHC position.  
Clients met with the bill's author and a compromise was struck, underscoring
the patient's right, as with other health records, to consent in the
disposition of records.
 
2.  One subscriber has been posting since August 1996 about applying for 
California Department of Rehabilitation services, the obstacles encountered,
the discouragements.  Replies have included tips on how to navigate the system 
and lots of encouragement.  
 
3.  California Department of Mental Health drafted a Medicare Waiver without
sufficient public input.  Using CINMHC, clients devised strategies resulting
in  meetings of clients, advocates and families to develop public managed care
Helpful Hints -- best practices, guidelines, and plans.
 
4.  Strategies were developed for joining the cross-disability campaign to use
In Home Supportive Services to avoid crisis hospitalization and to enhance
life quality.
 
One client noted:
 
     I have found this list to be more helpful than most any other
     source -- ... the helpfulness has to do with like mindedness of
     many on the list, feeling empowered by others sharing, others
     promptly replying to questions or concerns, discussion of shared
     issues of concern, etc.  I certainly felt more hope than I had in
     quite a while when I first discovered this list.  I know that
     lists have their own ups and downs -- as people go away and come
     back, pay more attention to other lists for awhile and then come
     back to this one, etc. it has bothered me that this list becomes
     nothing and then a bit of something -- whereas it had so much more
     life at one point (or so it seemed).   I still like to think this
     is a very effective way to change and improve the system as long
     as more and more people have access to and the skills to receive
     and to give information.   
 
My own average health-care expenses for the five-year period since I've
connected to the Internet are 59% of my average expenses for the five
preceding years.  That's convinced me that Internet access should be an
encouraged and  reimbursable health benefit.
 
From chaos and complexity theory we know that both too much order  and too
deep a chaos harm development and adaptability.  At the edge of chaos 
conditions develop for renewal, self-transcendence, creativity, self
organization and change. (11)  The Internet helps clients surf on that
creative edge.
 
Globally, there is a notable trend toward including the  voice of the actual
service user in all levels of behavioral health care:  planning,
implementation, staffing, evaluation, research.  The slogan of the South
African disability movement says this compellingly: "Nothing about me without
me."
 
 
 
A shorter version of this article appeared as "Consumer Self-Help and Advocacy
Online," Behavioral Healthcare Tomorrow Journal, Vol. 6, Issue 6, December,
1997,  CentraLink,  p 33.  This full written version was funded under a
contract with the United States Substance Abuse and Mental Health Services
Administration/Center for Mental Health Services.
 ______________
 
 
 
1.  CNMHC  prefers "client" to "consumer."  "Consumer," in California,
includes both the primary consumer and family members. 
2.  Kat Duff, The Alchemy of Illness, Pantheon, New York, 1993, p 103. 
3.  Courtenay Harding, Some Things We've Learned about Vocational
Rehabilitation of the Seriously and Persistently Mentally Ill, WICHE WestLink,
Volume 18, No. 2, June 1997, p 11.
4.  networks, National Technical Assistance Center for State Mental Health
Planning, Summer 1996, p 7.
5.  Donald Wood, Post-intellectualism and the Decline of Democracy, Praeger,
1996, p 36.
6.  Time, January 27, 1997, p 127.
7.  Stimulated by Zuscovitch and Justman: Networks, Sustainable
Differentiation, and Economic Development, in Networks in Action:
Communication, Economics and Human Knowledge, David Batten, John Casti, Roland
Thord, Eds. Spring-Verlag, 1995, p 282.
8.  Gerard Van der Leun, Rules of the Net, Hyperion, 1997, p 30.
9.  St Johns web page: http://rdz.stjohns.edu/hsrc
10.  Cornerstones for Mental Health Abstracts, Finnish Association for Mental
Health, 1997, p 241.
11.  Paraphrasing Dr. Uri Merry, Seminar - London 2-3, September, 1996. 
URL:  http://pw2.netcom.com/~nmerry/Urihome.htm