In 1967, my husband placed Abram Hoffer's new How To Live With Schizophrenia
on the mahogany coffee table I had custom designed for our living room. I had just signed
out of McLean Hospital in Belmont MA Against Medical Advice with their prognosis of
increasing deterioration and dependency.
Twenty years later, handcuffs and medication without consent as a medical treatment for
my illness converted me to a disability rights advocate. Now in the 90s, I've learned a
lot about owning my own madness while I also own(1) The
Madness Group - lists pages library chat and building (http://www.peoplewho.org/Madness).
This is partly my own personal story; partly the story of me as a representative of
others, an example not an exception of one instance of transformation; and primarily some
of the story of how people who experience mood swings, fear, voices and visions are
finding value on the Internet.
I've spent thirty days in a row deeply immersed in my past. I feel very sad, very
lonely, very impressed with how much I've done. And I feel ashamed of how very very angry
I have been, the repetition of the same dismissals and silencings, that I haven't found a
working strategy, that I'm not clever enough to take better care of myself. I mumble and
rumble and grumble about anger (and my fear that the prediction that my rage is
hyper-manic will fulfill itself); about my concerns about professional motivations to
diagnose and treat a stunningly large proportion of the population (concerns which are
called overly suspicious and even paranoid); my awareness that the meaning of
mental-health-related words has been so distorted that ordinary language no longer
communicates but instead lobbies and spins (dismissed as hypervigilance); my feelings of
helplessness and exclusion and being disrespected, all at the same time as coming to terms
with some concept of disability or exceptionality or humanity; my need to understand and
integrate; and always always my getting ready, getting ready, getting ready.
I've been directed by the fear that I would not again recover from a mental health
intervention (which has expanded to a suspicion of most medical interventions). And I knew
that traditional employment was problematic (when I applied for a humble job as a census
interviewer, I was embarrassed to learn that my psychiatric history was part of a routine
background check). To protect myself I turned towards advocacy.
I earned large amounts of sweat equity in transforming beliefs that seemed crystallized
and clear into language that was as transparent. I am proud of the products and humbled by
changes readers suggest that buff the results even more.
The inflexibility and disease orientation of the public mental health system, by continually resisting my at first tentative and later forceful suggestions for
change, propelled me to find a way where I would be more appreciated. And I did. The
Internet facilitates health care trends of self-help, self-healing, and an educated
consumer. After all of these years of being diminished by the mental health system, I had
a tool that put me back in charge.
Now I'm preparing for whatever's next by writing this memoir of the five years from
1994 to1998. I see there's a consistency to the devices I've used, acting surely on the
outward track while struggling on the inward track. I've joined, volunteered for
responsible tasks, developed materials and tools as the thought arose so that they would
then be available, filtered everything I read through my advocacy concerns, learning from
business and electronics and non-profit organizing. And learning from the history of the
mental health patient movement.
To place what is happening on the Internet in a social and political context, I
reviewed the literature about mental patient's organizing themselves.
In the twentieth century, as advanced societies moved from manufacturing to service,
the self help movement and the human rights movement parented the mental patient movement.
This new movement inherited the self help principles of volunteering, mutuality, valuing
the experiential, and deflating professional privilege, along with the civil rights focus
of other disability rights, gay rights, and women's movement groups (Reissman, Chamberlin)
and was nurtured by the politics of empowerment in an increasingly self-help oriented
society (Katz, Zinman). From the beginning there was a drive to unite in hope of change,
or at least raise awareness, and to release some of the feelings of anger and betrayal.
In the 60's, the mental patient movement challenged psychiatry's hold on explaining
behavior and remained separatist. Madness Network News published survivor
accounts and views. By the 80's, diagnosed people were changing the mental health system
from within (Church). Some groups maintained a strong anti-psychiatry ideology (Emerick);
society was urged to increase social acceptance of human diversity (Breggin). Some groups
developed institutional collaborations or at least interactions (Emerick).
Beginning in 1985, the U S federally sponsored Alternatives conferences gathered
consumers, survivors, and ex-patients who shared views as divergent as what they chose to
be called. The World Federation of Psychiatric Users, later renamed The World Federation
of Psychiatric Survivors and Users, was established in 1991 (del Vecchio). By the end of
the 90's the U S government and three fifths of the states had consumer affairs specialist
offices (Center For Mental Health Services 98-012). The 90's emphasized jobs and
consumer-operated business (Church). Nearly every country and U S state has a statewide
organization (Center For Mental Health Services 98-013).
How to reshape the rhetoric to affect reality is a central question (Everett). One
researcher sees four themes: language, labeling, stereotyping and stigma; the medical
model and how it has been accepted as the primary model for understanding mental illness;
the power base of psychiatry and the criticisms of it by those in the mental health rights
movement; professionalism and how this is understood by students and carers (Porter). The
base of shared values remains constant: self-determination and empowerment, independence,
egalitarianism, voluntariness, confidentiality, responsibility, choice, respect and
dignity, peer support, hope and recovery, social action (del Vecchio). Personal competence
is connected with a desire for and a willingness to take public action (Zimmerman and
Rappaport). And social action and social change remain a core movement activity (Van
The characteristics of feminist activities match movement values. Writing about the
women's movement, Linton notes that the people involved are the active central focus, that
activities are cooperative, that there is a recognized urge for liberation from the
oppression of the status quo, that issues are identified and strategies developed, that
the process is open and inclusive, that those involved are respected and valued, including
their diverse experiences even when in conflict (Linton).
Still, the problem for movement advocates lies in shaping a common social identity
among the diverse population of people with psychiatric disabilities (Kaufmann). For
instance, the reduction in government-sponsored housing programs became uncomfortably
visible when some expressed their discontent with services by choosing the streets. The
twenty-first century will still pose the challenge of rights as the family movement
campaigns to lessen the legal protections and increase coercive medical interventions and
Managed care and access to information have helped invert the health care pyramid.
Instead of first consulting a health expert in person, today health needs are first met by
data gathering (Ferguson). Those who use the Internet have an important tool for all
health, including mental health. At the end of 1998, Alta Vista Internet searches found 19
million hits for health, 292 thousand for mental health and 57 thousand for mental
Almost all current mutual support and advocacy of people who experience moods swings,
fear, voices, and visions are supported by local and national mental health systems and
associations, drug manufacturers, and grants. Some believe that this kind of funding dulls
the philosophic edge of the grass roots user movement and supports biomedicine instead of
healing and autonomy (Caras, 1994). On the other hand, increasing intensity of competition
among consumer organizations is anticipated as groups struggle to secure a niche in the
social movement industry (Kaufmann).
I believed linking us electronically could avoid the influence of a major funder by
distributing costs. The Internet provides a large enough population to find understanding
and support; even large cities don't seem to do that. There is a public intention to
involve users of mental health services in their services and to have users directing
their own care. I came to believe that access to one another on the Internet must be part
of this involvement.
1. "Owning" was the original word that mailing list management software gave to reference the electronic mail address of the human being who has software access to administer, command, control and configure the mailing list. Despite the term, and the word subscribe which denotes how one joins a list, there are not usually charges to the subscriber or profits to the owner.