Advocacy
Self-help is one of two co-equal aspects of the ex-patients' movement; the
other is advocacy, or working for political change. Unlike groups such as
Recovery Inc. or Schizophrenics Anonymous, patient liberation
groups tend
to address problems that go beyond the indivi dual. The basic principle of
the movement is that all laws and practices which induce discr imination
toward individuals who have been labeled "mentally ill" need to be changed,
to that a psychi atric diagnosis has no more impact on a person's
citizenship rights and responsibilities than is a diagnosis of diabetes or
heart disease. To that end, all commitment laws, forced treatment laws,
insan ity defenses, and other similar practices should be abolished.
Ending involuntary treatment is a long-term goal of the pa tients'
liberation movement; Meanwhile, movement activists work to improve
conditions of people subjected to f orced treatment, and to see that their
existing rights are respected, keeping in mind th at these are interim
steps within a basically unjust system. Existing laws have the power to
compel people to rec eive treatment for mental illness. This almost never
occurs in the case of physical illness, except in the rare instances when
courts overrule parents who refuse medical treatment for a child. The court
s in these instances assume the parens patriae role, acting in lieu of
parents in what the cour t defines as the child's best interest. When a
person of whatever age is ordered by a court to undergo psychiatric treat
ment this same parens patriae power comes into effect. This connection
between the legal an d medical systems places the mental patient at a
disadvantage that is not faced by patients with physical illnesses.
In addition to the parens patriae doctrine, which assumes that a mentally
ill individual is incapable of determining his or her own best interest an
additional doctrine, the police power of the state, is used to justify the
involuntary confinement of individuals labeled ment ally ill. This doctrine
is based on the assumption that mentally ill people are dangerous and may
do harm to themselves or to others if they are not confines. The belief in
the dangerous of the men tally ill is firmly rooted in our culture. It is
especially promoted by the mass media, which frequently run stories in
which crimes of violence are attributed to mental illness. If the alleged
criminal h as been previously hospitalized, the fact is prominently
mentioned; if not frequently a police officer or oth er authority figure
will be quoted to the affect that the accused is "a mental case" or "a nut"
I n addition, unsolved crimes are often similarly attributed. Both the
parens patriae power and the police pow er relate to the stereotyped view
of the prospective patient - that he or she is sick, unpredictable,
dangerous, unable to care for himself or herself, and unable to judge his
or her own best interest.
The movement's advocacy has focused on the right of the individual not to
be a patient rather than on mere procedural safeguards before involuntary
treatment c an be instituted. A major lawsuit testing this right was filed
by seven patients at Boston State Hospital in 1975, many of whom had been
members of a patients' rights group that met weekly in the hospital with
the aid of the Mental Patients' Liberation Front The suit, originally know
as Rogers v. Macht, was called, in later stages, Rogers v. Okin and Rogers
v. Commissioner of Mental Health (1982). It establis hed a limited right-
to-refuse-treatment (i.e. psychiatric drugs) for Massachusetts patients.
Since Rogers v. Commissioner; right-to-refuse- treatment cases have been
decided in a number of states, including New York (Rivers v. Katz, 1986)
and California (Re ise v. St Mary's Hospital, 1987), and the right has been
established administratively in some othe r states. While the movement
first greeted these decisions as victories, it has become clear that in
practice, these reforms do little to change the power relationship between
patient and psychiatrist. Each procedure (varying from state to state)
provides one or more methods to override the patient' s decision to refuse
drugs; and whether the procedure is administrative or judicial, the end
result is that most dr ug-refusing patients whose cases are heard are
forced, ultimately, to take the drugs, despite the ostensi ble right to
refuse them (Appelbaum, 1988).
Many movement activists have become discouraged and no longer bel
ieve that the courts will help
people avoid involuntary patienthood through the mechanism of the
right to refuse treatment.
Many individuals in the ex-patients' movement first encounter ed a critique
of the mental health system a critique which confirmed their feelings -in
the works of Thomas Szasz. In such books as The Myth of Mental Health
(1961) and The Manufacture of Madness (1970), in a career spanning more
than thirty years, Szasz has always spoken powerfully about the essentia l
wrongness of forced psychiatric treatment, and the fallacy of defining
social and behaviora l problems as illness. In a recent paper; Szasz (1989)
provides a devoting critique of the mental patients' "rig hts" movement
which has been guided largely by lawyers and non-patients. Rallying the
battle cry of "civil rights for mental patients, " professional civil
libertarians, special-Interest; monger ing attorneys, and the relatives of
mental patients join conventional psychiatrists demanding rights for menta
l patients - qua mental patients. The result has been a perverse sort of
affirmative action Program' since mental Patients are ill, they have a
right to treatment,' since many are homeless, they have a right to housing;
and so it goes, generating even a special right to reject treatment (a
right every non-men tal patient has without special dispensation). in
short, the phrase "rights of mental patients" has mean t everything but
according persons called "mental patients " Be same rights (and duties) are
accorded all adults qua citizens or persons. ....(p.l9)
The National Association of Psychiatric Survivors (NABS), founded in 1985
as the National Alliance of
Mental Patients, promotes the same ideals Szasz espouses.
The first item in its Goal and Philosophy Statement reads:
"To promote the human and civil rights of people in and out of
psychiatric treatment situations, with special attention to their absolute
right to freedom of choice. To work towards the end of involuntary psyche
intervention, including civil commitment and forced procedures such as
electroshock psychosurgery, forced drugging, restraint and seclusion,
holding that such intervention against one's will is not a form of
treatment, but a violation of liberty and the right to control one 's own
body and mind. We emphasize freedom of choice for people wanting to receive
psychiatric services through true informed consent to treatment which
includes the right to refuse any unwanted treatments. We will also work to
assure the rights of all people who have been psychiatrically labeled
including but not limited to people in halfway houses, day treatment,
residential facilities, vocati onal rehabilitation, nursing homes, psycho-
social rehabilitation clubs as well as psychiatric institutions. ....(NAPS,
no date, p.1)"
This is the essence of "mental patients" liberation. NAPS was formed
specifically to counter the trend toward reformist "consumerism," which
developed as the psychiatry establishment began to fund ex-patient self-
help. Ironically, the same developments which led to the movement's growth
and to the operation of increasing numbers of ex-patient-run alternative
programs, also weakened the radical voices within the movement and promoted
the views of far more cooperative "consumers." The very term "consumer"
implies an equality of power which simply does not exist; mental health
"consumers" are still subject to involuntary commitment and treatment and
the defining of their experience by others. It is not surprising that one
the Community Support Program a t NIMH began funding "consumer"
conferences, the International Conference on Human Rig hts and Psychiatric
Oppression disbanded. The first CSP-funded conference, "Alternatives '85"
was hel d in Baltimore in June, 1985; the last International Conference in
Burlington, Vermont in August of that year. The dissolution was added by a
group of "consumers" who may have seen the liberation perspecti ve as a
threat at the same time, some extreme radicals opposed any form of
organization as oppressive, believing that a totally decentralized and
unstructured movement could accomplish its goals.
Madness Network News disintegrated the next year. Its all -volunteer staff
became exhausted by the effort of putting out the newspaper with no funds
by member subscriptions, and they were succeeded by a very small group of
extreme radicals who published only one issue - critical of anyone
attempting to develop organizational structure or sources of funding for
movement activities. The paper then ceased publication, leaving a gap in
movement communication that went unfilled for several years, Although
Dendron, a newsletter published by the Clearinghouse on Human Rights and
Psychiatry in Eugene, Oregon, began publishing shortly thereafter, only
recently has it become as visible within the movement as had been Madness
Network News.
Where the Movement Stands Now
At present many groups exist that claim to speak "for" patie nts, that is,
to be patients' advocates Even the American Psychiatric Association claims
this role, as does the National Alliance for the Mentally Ill (NAMl), a
group primarily composed of relatives of patients, which enthusiastically
embraces the medical model and promotes the expansion of involuntary
commitm ent and the lifetime control of people labeled "mentally ill."
However, a basic liberation princi ple is that people must speak for
themselves.
Former patients recognize numerous currents of opinion within their
community (which, after all, numbers in the millions). There are groups
whose members promote the illness metaphor tag, National Depressive and
Manic-Depressive Association); groups whose members promote self-help in
conjunction with treatment for illness (e.g, Recovery, Inc.); groups whose
members see themselves as consumers (e.g, the National Mental Health
Consumers' Association); and groups whose members see themselves as
liberationists (e.g., National Association of Psychiatric Survivors).
However, it is safe to say that by far the largest number of patients and
ex-patients are those who identify with none of these organizations -
indeed most patients and ex-patients probably never even heard of these
groups. The movement continues to face formida ble obstacles. The
psychiatric/medical model of "mental illness" is widely accepted by the
general public. Indeed, new psychiatric "illnesses" are being "discovered"
all the time, and psychiatry now claim s that social deviates - from rapist
to repetitive gamblers - are suffering from a variety of new ly defined
"mental illnesses." Psychiatry is entrenched, as well, in the courts, the
prisons, the sc hools, and all major institutions of society.
At the same time, there are many hopeful signs for the m ovement. The ex-
patients' movement is developing alliances with the physically disabled
people have org anized their own self-help programs, using the model of
independent living. According to the princi ples of independent living, any
person - no matter how physically disabled he or she may be - can live
independently if provided with the proper supports. Such supports must be
individualized - a person may ne ed special equipment personal care
attendants, modified transportation vehicles, an so forth. The particular
mix of supports is determined by the individual in consultation with an
independent living spec ialist (who is also a physically disabled person).
As the disability rights movement has grown, it has become a powerful force
for legal change as well. For more than ten years, this movement has
lobbied in favor of the Americans with Disabilities Act the so-called civil
rights bill for the disabled. The bill was signed into law on July 26,
1990.
Although the ex-patients' movement entered that struggle late, the final
version of the Act does include persons with "psychiatric disabilities"
under its protections.
Linkages of the ex-patients' movement with the impoverished include efforts
at affordable housing, campaigns for universal medical insurance, and
involvement i n the Rainbow Coalition. It has proved extremely useful for
ex-patient activists to become involved in these activities - not only do
ex-patients require the services being advocated but demystification in t
he eyes of one's allies can serve an invaluable purpose. When labeled as
"mentally ill" - a nam eless, faceless person - the "mental patient" may be
seen as the enemy; as a co-worker and a colleague, facing the same problems
and struggling for the same solutions, the ex-patient becomes an
individual: knowable and understandable.
The growing internationalization of the ex-patients' move ment is another
sign of the movement' s growth and strength. As groups exchange
newsletters, and atten d meetings and conferences, a shared ideology is
developing. Although the lack of a solidifying terminology conti nues to be
troubling, such variety does not necessarily indicate wide variations in
viewpoints and a ctivities. Whether group members call themselves clients,
consumers, ex-patients, users, or psychiatric survivors, groups throughout
the world are united by the goals of self-determination and full
citizenship rights for their members.
It is true that the vast majority of former patients re main unorganized,
but this challenge is being met. As groups become more visible, they
recruit more members. This occ urs because ex -patients groups speak to a
truth of the patienthood experience: that people's anger and frustration
are real and valid, and that only by speaking out can individuals who have
been harmed by the e ntrenched power of psychiatry mount a challenge
against it.
References:
Appelbaum, D. (1988). The right to refuse treatment
with anti psychotic drugs: Retrospect and prospect
American Journal of Psychiatry, 145, 413 419.
Beers, C. (1953). A mind that found itself. Garden
City, New York; Doubleday.
Chamberlin, J. (1979). On our own: Patient-controll
ed alternatives to the mental health system. New York;
McGraw-IIill.
Chamberlin, J. (1987). The case for separatism. Ian
L Parker and E. Peck (Fds.), Power in strange plac
es (pp.
24- 26). London, England: Good Practices in Mental
Health.
Chamberlin, J, Rogers, J.A, and Sneed, C.S. (1989).
Consumers, families, and community support systems.
Psychosocial Rehabilitation Journal, 12, 93-106.
Dain, N. (1989). Critics and dissenters: Reflections on 'anti-psychiatry'
in the United States. Journal of the
History of the Behavioral Sciences, 25, 3-25.
National Association of Psychiatric Survivors. (No date). Goals and
philosophy statement. Unpublished
manuscript.
Reports to the President for the President's Commission on Mental Health.
(1978). Volume 1. Washington, D.C.: United States Government Printing
Office.
Riese v. St Mary's Hospital, 209 Cat App. 3rd, 1303, 1987.
Rivers v. Katz, 67 N.Y, 2nd, 485, 1986.
Rogers v. Commissioner of Mental Health, 390 Mass.
498, 1982.
Szasz, T. (1961). The myth of mental illness. New York: Hoeber-Harper.
Szasz, T. (1970). The manufacture of madness. New York: Deli.
Szasz, T. (1989, July). The myth of the rights of mental patients. Liberty,
pp. 19-26.