Radical Psychology
2006, Volume Five
A
Matter of
Definition:
Acknowledging
Consumer/Survivor Experiences through Narrative
Abstract:
Despite the claims of experts, the terms survivor and consumer, as well
as the
meanings and standpoints they may represent, must be recognized not as
reified categories but
as the lived experience of people who define themselves in those roles
in relation to each other
and the mental health system. The realities of the
consumer/survivor/ex-patient movement are
diminished when its history and purposes are defined and manipulated by
experts for their own
interests and purposes. Examples of the 'heroic survivor narrative' and
grassroots advocates'
narratives are presented to reveal underlying continuities and
differences in activists'
experiences in the mental health system.
Keywords: Survivor, Consumer,
Narrative, Consumer-Survivor Movement,
Advocacy
Introduction
"The struggle to end
domination, the individual struggle to resist colonization, to move
from
object to subject, is expressed in the effort to establish the
liberatory voice – that way of
speaking that is no longer determined by one's status as object – as
oppressed being. That way
of speaking is characterized by opposition, by resistance. It demands
that paradigms shift – that
we learn to talk – to listen – to hear in a new way" (bell hooks
1989,
p.15).
Lately
there has been a
flurry of debate in two professional journals, with competing claims
and counter-claims about the history of antipsychiatry and the
consumer/survivor movement,
and serious contention about use of the terms 'survivor' and
'consumer.' (Tomes 2006,
Scharfstein and Dickerson,
2006, Rissmiller and
Rissmiller, 2006, Oaks, 2006;
see also Torrey 1997,
Mahler 1997) Which is
acceptable, and when, and why, to describe the people who have taken
various sorts of activist stance in relation to the mental health
system? Experts write, activists and other experts
respond, experts reply and refute the opposing claims. Is there truth
here?
On
the one hand, the
present controversy can be seen as yet another political correctness
dispute regarding the relationship between mental health experts and
their objects of treatment
(cf. Satel, 2002); on the other hand, it
serves as an excellent
opportunity to go beyond the
language wars and recognize that (1) human activism, in its many forms,
has proven to be an
effective means to redefine relationships between psychiatrists and
recipients of treatment; (2) such strident claims-making may be seen as
a defense of the experts' power to control the
language of definition, under attack by the very objects it seeks to
define; and (3) the power to
define the self, and to define one's experience (in relation to
madness, the mental health system
and more), is being actively wrested from the experts and returned to
the individual as defining
subject.
Certainly
these
disagreements have a great deal to do with the power to define
acceptable
discourse (Foucault 1970), and
divergent interests (McCubbin and
Cohen,1996)
as
well as the
representation of marginalized standpoints in relation to the
structures of domination and
control of information (Smith 1987). In
the early years of the mad
liberation movement,
dissenting professionals were an important voice in the call to arms of
the Madness Network
News; later, the ex-patients found that they had to press for their
right to speak and organize, rather than being organized 'for' and
having their experiences represented 'to' and 'for' them
(Morrison 2005). Today, we see a new
and interesting phenomenon in
which the psychiatric
establishment is (1) actively recognizing the movement and its effects,
while (2) attempting to
take control of its representation and claiming to be 'experts' on how
words should be used by activists, as well as how their history should
be represented. In addition, there is a 'divide and conquer' effect
when 'good' consumers are praised and 'bad' survivors
vilified (cf. Torrey
1997, Satel 2000).
I
find myself
reflecting on these published encounters as a form of colonization,
another expert
colonization of 'mental patients' by experts who endeavor to define,
differentiate, and limit the
identities of those who are being defined, while establishing their
dominant expert status and
attempting to control the discourse of people's lives. The reification
of 'consumer' or 'survivor' is a process of confinement and limitation
just as a
psychiatric diagnosis acts to recognize some aspects while ignoring
others, and creating an object of definition, action and
expectation rather than acknowledging an evolving and participating
subject. People who
identify as consumers, or survivors, or advocates, or human rights
activists, can converse about
these differences and arrive at meaningful identities that will work
for a while. Being defined
by others is exactly what this movement is not about. Resistance to
expert definition is key for
many participants.
Research
and Standpoint
I have been personally
involved in the consumer/survivor/ex-patient (c/s/x) movement in the
United States since 1996. For nearly ten years I have participated in,
observed, studied and written
about the movement; it was the topic of my Ph.D. dissertation (Morrison
2000, 2005). In my
experience, the richness of the c/s/x designation is central to
understanding the complexity of its identity and its work. I defend
against being called an expert, however (a position which
sometimes constrains my professional development). The ongoing premise
of the movement is
a mix of self-determination, of voice, of freedom, of choice, of
advocacy. As a participant, and
observer, I have come to appreciate the rich and complex history of the
movement, its diverse
and evolving members and leaders, and its ongoing process of
development in the present day.
If
people want to know
more about the c/s/x movement, it is important to observe, to talk, to
read, and to listen, perhaps to participate. What is a consumer, what
is a survivor? In my
research, the more I talked and listened, the more I saw (and was told)
that these words are
labels, much like psychiatric diagnoses. They confer or reflect a
social status with particular roles or expected behaviors attached.
They may be placed upon a person, they may be taken on
by a person. Their meanings are emergent from an identity which is
relational, in development,
occurring between one person and another – a 'provider,' an
administrator, another activist, or
consumer, or survivor, a researcher. These identities may change from
day to day, as our
purposes and our goals and our means and our obstacles bring new
meanings to our endeavors.
Sharing
experiences
through narrative is a central aspect of movement life. Advocates share
their experience in helping others to find their strengths and move
toward activism and
self-determination. Movement heroes share their stories at great public
gatherings of people
who have been defined and treated by psychiatry: movement conferences
bring together people
at all levels of consciousness about their relationship to psychiatry,
who may spend three days listening and talking with each other. Similar
experiences occur in small peer-support settings,
another unique social space where 'hidden transcripts' (Scott 1990) can
emerge to challenge the
dominant narrative and initiate new insights.
The
consciousness-raising experience of redefinition and reassessment is a
very personal
process, and at times a very public one. Within the loose configuration
of the c/s/x movement,
individuals are free to define themselves in a fluid response to their
needs, their constraints,
their visions, and in the process redefine their relationships to
diagnosis and treatment. I have
seen this process, and participated in it. It has changed my life. My
own multiplicity of
identity (consumer, researcher, survivor, activist, student, professor)
has put me in touch with
many people who have undergone (and continue to experience) identity
transformations in the
context of this social movement.
For
people without
experience of psychiatric oppression, of whatever degree, the awareness
is
hard to fathom (Davidson 2003) and easy
to resist. Sometimes interested
professionals have
talked with me at conferences about how they 'don't get it' – and other
times they have been
overtaken with realizations about their own experience, and find a new
community of equals. The message of the c/s/x movement resonates with
those who have had their trust betrayed,
their realities discredited, by 'mental health providers' (one of my
favorite phrases) or in other
settings.
This
paper will not
further address either the 'correctness' or the power issues of the
current
debate, instead going beyond it to listen to the voices of people who
are actively choosing,
defining and living the meanings of 'survivor' and 'consumer' in their
daily lives. The
consumer/survivor/ex-patient voice is not a singularity, and neither is
any one of its lexical
parts. Acknowledging participant narratives allows a fuller
understanding of issues encountered
in their relations with mental health professionals. A thoughtful and
informed recognition of
their experience, more than wordplay with discrediting labels, provides
an opportunity to
understand, support and work with their efforts to find justice,
self-determination, and
non-oppressive helping alternatives. Seeing activists' similarities and
differences, as well as
their common themes and issues, allows an appreciation of complexity
that avoids the
stereotypes and labeling so often encountered in the mental health
system.
The
Heroic Survivor Narrative
The celebration of
resistant identities in the c/s/x movement is personified by a
collection of
heroic survivor narratives. Chamberlin's On Our Own (1978) Kate
Millett's The Loony-Bin Trip
(1990), Shimrat's Call Me Crazy (1997), and Wendy Funk's What
Difference Does it Make (The
Journey of a Soul Survivor) (1998) are
important examples of heroic
accounts by individuals
who survived the challenge of their encounters with psychiatry. Shrink
Resistant (Burstow and Weitz 1988),
Beyond Bedlam (Grobe 1995), Cry of
the Invisible (Susko 1991), and Madness,
Heresy and the Rumor of Angels (Farber 1993)
are examples of edited
collections of personal
accounts. Personal narratives of surviving, outwitting, or avoiding
psychiatry appear regularly in
movement publications and provide an important segment of programming
at annual
conferences.
These
narratives play
an important part in the movement's development and maintenance of
collective identity. The experience of 'membership' builds on the
resonance of these stories
with individual experience, and it is reinforced through the repetition
of personal accounts.
Narratives of survival are a tradition and a recruitment tool for the
movement. They provide a
means to frame one's own experience with psychiatry, to experience a
collective recognition of
shared injustice, and to identify with the power of heroic accounts.
Leonard
Roy Frank's
story is told in Farber's (1993)
collection, and Sally Zinman's in
Madness
Network News (also recounted during an Alternatives 1999 plenary
session). I will not do
justice to their experience by summarizing in this way, but simply
expose the structure of the
stories. Both Leonard and Sally were put into treatment after their
behaviors became
incomprehensible to their concerned parents: Leonard grew a beard,
became vegetarian, and
spent all his time with books; Sally stopped wearing makeup and
expressed alienation from
her parents. She also stopped using her name.
Their
stories describe
the 'betrayal funnel' (Goffman 1961)
experience, as both reluctantly
entered treatment they then found to be extreme and abusive: Leonard
received insulin shock
and electroshock treatments from his doctors and Sally was locked in a
cellar and abused by
hers. Both attempted to 'escape,' first by reasoning with their captors
and then by resisting
(Sally ran away and was forcibly returned with the help of her parents;
Leonard refused treatment and was 'treated' against his will); both
were discredited, punished and received
further treatment, as their efforts to resist and talk back were
interpreted as signs of their illness.
Over
time, both
realized that their best strategy was to be convincingly 'normal' and
stop
arguing or fighting back. Convincing the professionals that their
treatment had worked became
the best way to gain their freedom. Both described the 'never again'
determination to prevent
this from happening to others if they survived. After release, they
discovered other people who
had survived similar suffering and joined with them in activist
alliances to protect rights of
patients and expose psychiatric abuse. Leonard was an early member of
the Madness Network
News collective and has been active in the movement since its earliest
years; Sally has been
active since the 1980s and continues to be a leader of the California
Network of Mental Health
Clients. Similar accounts appear in the other exemplary narratives
listed above.
These
heroic survivor
narratives reveal a five-part framework of experience that is quite
consistent across examples. The structure provides a model for
understanding the process of
identity transformation in the creation of resistant identities. Not
everyone goes through five 'phases' in orderly or linear fashion, and
the framework is not meant
to provide an evolutionary
model of experience. Rather, the five parts provide a structure to
understand various forms of
resistance in relation to treatment, to professionals, and to
psychiatrization. I will describe the
framework of 'survivor narratives' in the next section, and then
compare 'ordinary'
(grassroots) activists' experiences of psychiatry (my interview data)
to the heroic framework
presented. This comparison reveals the range of responses that
characterize 'resistant' identities in relation to psychiatry, and aids
in understanding the complexity of movement
membership and experience.
Heroic
Survivor Narrative Framework
Entry into System:
Trust/Distrust, Helping/Harm
Some activists describe
an initial recognition of the need to seek help for distress or
disturbance, and a voluntary entry into the patient role. Others
describe an involuntary
introduction to this process. They often make a good-faith effort to
benefit from help, because
they have hope, or because they have no choice. They may initially
believe in the doctor's
authority and put their trust in the psychiatric diagnosis, complying
with their designated treatment. Later, they perceive that the
treatment is not helping, or is causing them harm. In an
alternate form, they may not have the initial period of trust and
describe only their experience of
harm and abuse. Through whichever route, each individual comes to the
point of finding the 'help' to be harmful.
Disregard
by System:
Discrediting of Personal Realities
Survivor narratives go
on to describe the experience of harm being compounded by a disregard
for their efforts to define the experience, to negotiate the terms of
treatment, or to leave the
situation. Their sense of betrayal (if trust was achieved) and their
disappointment that their own 'experiential knowledge' of the situation
can be so discredited is a
powerful aspect of the
accounts. The heroic narrative describes the transformation from
ordinary human being to 'mental patient,' with the realization that the
psychiatric label destroys the credibility one may
still expect to have in human interaction.
Resistant
Response:
Refusing Incorporation
In this pivotal phase
of the survivor narrative, efforts to negotiate on the basis of trust
and
reason are abandoned. The 'master status' of mental patient identity
and its discrediting
consequences are rejected, with an effort to maintain a positive
identity of the self. The activists
resist the internalization of deviant identity, and the resultant
incorporation of (into) the
psychiatric narrative. After varying lengths of time, some form of
personal heroism or assistance from others will result in a personal
victory involving symbolic and/or physical
escape from psychiatric oppression.
Solidarity:
Recognition
of Shared Oppression
Activists may frame
their heroic narratives as individual experiences of survival, with a
later
recognition of shared oppression and a wish to prevent it from
happening to others. In other
cases, an experience of shared awareness serves as the source of
recognition of oppression. In
either case, the experience of solidarity is a vital part of the
movement's survivor narratives.
Individual survival is not enough; some form of consciousness-raising
leads them to an experience of collective identity.
Politicization:
Making
Demands for System Change
In this phase,
activists move beyond their experience of shared oppression to an
activist
position. With their peers, they develop a motivation for challenging
the status quo by exposing
the situation of oppression and abuse. They move beyond personal
experience and take a
politicized stance, recognizing their shared experience as a reason and
a catalyst for creating
change. They then take action based on their views of injustice,
available methods to gain and
use power, and objectives for change.
Grassroots
Narratives
In-depth
interviews
with twelve grassroots activists revealed similar forms of resistance,
reflected in their responses to the transition into psychiatric
patienthood and maintenance of
individual identities. Resistance to psychiatrization can be understood
as degree of acceptance
or rejection of the patient role (Parsons
1951); as degree of
acceptance or rejection of the power and privilege of the physician's
role (which parallels the simultaneous disempowerment and
discrediting of the patient role), and in terms of internalized
acceptance or rejection of
secondary deviant (mental patient) identity as described by Scheff
(1999). Their individual
experiences reflect the underlying values and goals of the movement --
maintaining voice,
choice, and self-determination -- first at a nascent level in response
to the contradictions of personal experience, and then with
increasingly conscious, group-oriented, and activist levels of
development. While the responses are less dramatic than the heroic
survivor narratives, the
framework is comparable and the issues, while diverse, reflect similar
concerns. It doesn't do
anyone's story justice to characterize it only by these dimensions;
however, these dimensions
were present to some degree in everyone's story.
All
of the individuals
interviewed were working as advocates in the mental health system.
They provided information, support, and intervention in assisting
others to negotiate the mental
health and community systems, finding ways to make choices and get
their needs met. The
advocates had all been diagnosed and treated for 'severe and persistent
mental illness.' They
also served on various mental health boards and committees to represent
the consumer/survivor point of view, as well as the state Mental Health
Consumers Association.
Entry
into System:
Trust/Distrust, Helping/Harm
First, activists
commonly describe an initial acknowledgement or recognition of the need
to
seek help for distress or disturbance, and a willing entry into the
patient role (some had been
involuntarily committed, but were later convinced that their problems
were caused by a
psychiatric illness.)
"Well,
how I got in
that system is I tried to commit suicide. I was going through a divorce
and
heavily on my addiction. Of course, I had a doctor there that did not
understand about people
with mental illness. Kept me there for a week or two and threw me right
on the street. [Went
back to the hospital], the same doctor said, we can't do anything for
him except send him over
to [the state hospital]. I said, well, I need help – send me there."
Second,
they make an
initial good-faith effort to benefit from the help given – namely, to
accept a psychiatric diagnostic label, to believe the doctor's
authority and expertise, and to
comply with the designated treatment. These are two steps that a
patient takes to move into the
realm of psychiatric patienthood (psychiatrization) before the
development of resistant identity
– placing trust in the caregivers who define your problem, and
accepting their claims to have
the solution you need. Here are two examples of initial
hospitalizations:
"My
first
hospitalization was mainly because I thought I was pregnant with God or
the Devil's
baby – and I couldn't decide who. So they took me to the hospital. And
they put me on medicine
and I was…I felt better. … So I was very lucky. And my family was very
pro, Take your
medication. But I still didn't believe…I didn't want to…It wasn't okay
with me that I had to take
this medicine forever."
"After
I had my son I
was having trouble sleeping and they admitted me to the community
hospital. They started me on some medication. I actually got worse
instead of better. They had
to admit me to a state hospital. Then I was treated as an outpatient. I
had an allergic reaction to
the medication, so I was admitted to the hospital and from there they
took away my son and put
me in my first outpatient. They diagnosed me with schizophrenia and
postpartum psychosis."
"It's
like if someone
has pain, we say, "Here, take an aspirin," but we don't find what the
root
cause of the pain is. We mask the pain, we'll diminish the pain, but we
won't find out what's
causing it, what's bringing it back. That's what I see the medication
doing. And I take
medication. There's the paradox. I take medication, because I don't
have a viable alternative."
These
experiences
correspond with the first phase of the 'heroic survivor narrative.'
They
reveal undercurrents of the themes that would be expected in a more
dramatic 'survivor'
experience, yet the activists are not emphatic about their
dissatisfaction with treatment. Instead
they use more indirect indicators that express a skeptical,
what-can-you-do-about-it view,
accepting the necessity of using a system that can help them when they
choose to use it.
"I
have been [doing
self-advocacy] all along. I have been fortunate enough to have doctors
that
let you tell them what you need and how much you need, and if I felt I
was overmedicated, I
would say so – they accepted that."
Awareness
of personal
choices regarding medication adjustment, compliance, and the need to
function in the community drive the negotiations of these activists
with psychiatry. Neither
heroic nor passive, they are active participants in the relationship.
System
Disregard:
Discrediting of Personal Experience
"I
was usually pretty
good about taking medication that was prescribed, because I saw it as
either being done voluntarily or being done forcefully, that I could go
a compliant way or I
could go a noncompliant way and the consequences of that, I saw, as
being pretty harsh. I don't
see psychiatry healing or even understanding the experiences that
people go through. I think what they do is medicate it, but they don't
understand it. So patienthood is very frustrating,
because you're not understood."
Sometimes,
the
importance of recognizing experiential knowledge is stressed: "I
guess most
importantly, I try to let the people that deliver services know that
they must not
equate our illness with our intelligence, and that listening will be a
key to their success. Because
if they listen to what we have to say, then they will be able to
develop the programs that will
enable us to heal."
Talking
back to
psychiatry involves resistance to the psychiatric narrative. According
to the
psychiatric narrative, success in treatment is often measured by
'gaining insight,' which
involves accepting psychiatry's explanatory model of one's problem or
distress; this is logically
followed by 'treatment compliance' which ideally leads to recovery and
a resumption of as 'normal' (or at least 'normally deviant') a social
role as possible.
This advocate describes
her encounter with psychiatry's low expectations: "They said I had
schizophrenia and I would never graduate from the twelfth grade. Not
only
did I graduate from high school but I got my bachelors and my masters.
So, it's like whenever I
went back to that hospital for hospitalization there was Dr. __. And I
said, ‘Good morning Dr.
__, how are you?' I have no animosity against the guy or anything but
he was wrong to judge
like that."
"Because, the provider
is over the consumer in such a way that sometimes they limit them
unnecessarily, and the consumer will want to do more. Now granted, some
consumers are happy
with that and that works for them and that's good. But, like for me it
wouldn't work."
"They were not
addressing my problem at all. They were just telling me what they
wanted me
to do. It was not what I wanted to do at all or what I needed at all. I
just felt coerced. I knew that
I had a problem because I was aware of my feelings and I know what I
was thinking and feeling
was not right. I knew I needed their medication. But the rest of it I
was not too fond of. I was hospitalized more than ten times."
"We honor
mystics and
we stigmatize crazies. And I don't know any other word to use because
that's how society looks at it – no matter how gently they try to put
it or how politically active or
correct they try to put it. And I don't feel crazy either. I feel
stigmatized. I feel other-worldly. I
feel that I have an alternate consciousness."
This activist describes
her victory of voice and self-advocacy over a doctor who tried to keep
her in the hospital against her will: "One time [in the hospital], my
time was up and my doctor
was petitioning for me to stay longer and I was petitioning for myself
to get out so we went
before the judge and had the hearing. And I brought in my shopping bag
full of proof that I had
collected. I explained to the judge, I says, ‘I'm on this, this is
working well for me. I don't need
this, I don't have this, I don't need this, I don't need this. And so
therefore, I'm on the right stuff
and so I should be able to go free. I'm thinking more clearly, I've
received the help I need, blah,
blah, blah, blah, blah.' And then the doctor, he brought his case up.
And then the judge, he
agreed to let me go. And you now what, that same doctor, afterward I
was going to get my belongings and he goes, ‘Looks like you won.' And I
says, ‘Looks that way.'
Resistant
Response:
Refusing Incorporation
The realization of
active choice and self-determination marks the emergence of resistant
identity within the individual-who-was-patient. This resistance occurs
not just within the
individual; the 'patient' or 'consumer' or 'survivor' role exists in
relation to a doctor or
provider. So the changes occur IN RELATION to the power, authority, and
expertise of
psychiatry within the individual's own treatment context. It can be
difficult and risky to speak
this resistance, to 'talk back' and express a different point of view –
it is often characterized by caregivers as 'lack of insight' or
'non-compliance,' or as an actual symptom of the illness or
brain disease ("aren't you grandiose").
People who feel the
resistance and begin to act on it by speaking out can take different
routes
into the experience of 'voice' in the treatment setting. Here are two
examples:
"Now the doctor that I
see as an outpatient I've got to somehow convince and work with and
everything to get my meds the way they should be. So, in the meantime I
have to take it day by
day and do my best each day even if I'm on this meds I have to take
them as prescribed even
though I don't agree with it. Sometimes I'm an outpatient and I'll tell
my doctor, I'll say, ‘I'm
taking my meds as prescribed even though I don't always agree with it,
I'm still taking these
meds faithfully," and they're like, ‘Good, you do that.'"
"That's when
I first
focused on self-help, because [some of us in the hospital] waited until
everybody got to bed, at night, and then we had our little self-help
group. That's how I really
learned about self-help. And then this doctor found out we was doing
it, he discharged two and
sent one upstairs just to break it up, because he was scared. And
that's when I really learned
about self-help. People in the mental health profession was scared of
it."
A person can maintain a
relationship with the psychiatric system and yet maintain a separate
definition of what is helpful and not helpful. At a dialogue between
mental health
consumer/survivors and professionals, one advocate spoke of the
importance of 'creative
non-compliance' in finding the way to recovery. "It is very empowering
to rebel and it can be healing. Non-compliance allowed me to
[recover]. If I was caught running naked through the woods, would you
have paid for that 'treatment'? No. Was it healing? Yes. Did I go
against the rules of
society? Yes." At that
same dialogue, a psychiatrist noted, "I began to understand recovery
when I saw patients
growing and changing even as they were still defined as ill. But I was
seeing them change as
individuals, as people." (Morrison 1998).
Through creative
non-compliance, a person can test limits, take a risk, and find out
what is
possible. "We have to be allowed to make our own mistakes or we will
never get better. You
can't protect us and help us get well."
Another activist made
her own medication adjustment in order to be able to perform at work:
"They don't treat people with mental illness like people. . . I've had
to prove myself over and
over again. They had me so medicated, I was sleeping fourteen hours a
day, and they were
happy with that. I wanted to decrease my medication and they told me
no. They told me I
couldn't do it. So I did it myself. Instead of taking three pills a day
I took two. And I did it for three months and when I went back to the
doctor I asked him again, ‘Can I decrease my
medication?'"
The appearance of
compliance is necessary to escape the spiral of 'authority' and achieve
self-determination: "So you have to even know what they want you to do
or say or how they
want you to act so you can get out of there quicker. And then, my one
doctor one time, he was
increasing the dosage of my lithium so it was making my mouth dry so I
was drinking a lot of
water. Well, because of that [drinking a lot of water], my lithium dose
was dulled down so I had
to drink less water and I had to let him increase my lithium. Although
I knew that wasn't a
therapeutic dose, but just to get out [of the hospital]."
"They look at
your
records, they don't believe what you say. They look at your records
from
the last hospitalization, and they're not necessarily taking your word
for what's going on. They'd
rather believe what someone wrote about you some other time. It's a
question of being taken
seriously."
"That's what goes along
with patienthood and the feeling of powerlessness. And you're
powerless because you're not included in the process, you are swept up
– you are swept up by
someone's agenda and someone's process – not your own, not what's going
on inside you."
And the staff controls
the definition of what is required or helpful and who has the power to
decide, as when hospital patients are coerced to attend group therapy:
"Not what's important to
you, it's whatever [they want]. Like, ‘We've got to run a group, so
come to this group.' That's
what I mean, the groups aren't therapeutic, they're someone's idea of
what's therapeutic."
Another woman gave this
example of unwanted programming and social control: "There was
one psychiatrist who had a daily regimen. He had each hour what you
should do, get up in the
morning, take a shower, eat your breakfast, go out and walk for an
hour, come in and have your
lunch and read something and exercise and get your housework done and
exercise some more and eat your dinner and watch healthy programs and
exercise some more. We called him the
drill sergeant because that's the way he ran his psychiatric program.
Most people, it's not what
they need at all. If a person is threatening to be evicted from their
house, what good is exercise
going to do? And eating a healthy meal?"
Solidarity:
Recognition
of Shared Oppression
The fourth phase of the
heroic survivor narrative involves going beyond the individual
awareness of conflicting interests and the individual exercise of
resistance to authority. It
reveals a perception of shared awareness and development of a group
consciousness – a
consciousness of the value and expertise of EACH OTHER in relation to
psychiatric authority.
As individuals, they had claimed the personal authority and the right
to make choices in their treatment and their daily lives. Now they were
finding their value to each other in providing
mutual assistance and understanding of their shared realities.
The step
into peer
support allows for the development of group consciousness and the
subsequent burgeoning of identity politics (Anspach
1979). All this is
occurring in relation to
the newly determined 'other' of psychiatry and its practitioners, which
now exist in opposition
to the collective 'c/s/x' or activated patient identity.
"The only
thing that's
therapeutic in any way, shape or form is the interaction between the
patients themselves. Because I think they're more on the same
wavelength than the doctors or
the support staff or the therapists, who don't have a clue. … When
people get well they get well
despite psychiatry. Or they've had someone in the psychiatric process
who sees them as a human being, not as an illness. And to see someone
as a human being, you really have to be there . . .
you really have to be there".
"The health care system
for psychiatric needs has become desensitized. They've lived in their
model. Couldn't even call it a medical model anymore because it's just
some kind of . . . it's a
shroud. And, it's a matter of pulling them out of that shroud and see
that there are some other
options, some exciting things that can be done."
While expressing their
hope, the activists revealed their frustration at being treated as
'less
than' the so-called normal people, in spite of their expertise, their
success at helping others, and
their efforts at recovery.
"I've heard them talk.
And, they don't really have any concept of what it's like to be inside.
They think that this consumer movement with consumers running drop-in
centers and stuff,
consumers working, they think, ‘Oh, they're not going to be qualified,
they're not educated
enough.' So, they really are against some of the consumer movement in
terms of consumers
being employed to help other consumers."
"I guess it was the
years and years of being told that I was sick because I wanted to be.
Even
when I almost died, they [family members] just did not support my
efforts at recovery. So it was
then, even before the word 'peer support' became fashionable, that I
realized the strength in
being with people who share common experiences."
Much of what occurred
in these advocates' lives was not directly related to the larger
movement. For most of the interview participants, contact with the
movement grew out of their
advocacy activities, and not the other way around. In that way, we see
an echo of the heroic 'origin stories' in the interviews:
"I didn't know there
was a national movement. I think my first exposure to national was
through the National Depressive and Manic Depressive Association
(NDMDA) which is
medical-model based. But, that was my first exposure to people from all
over the world getting
together. And it's not so much what was said in the conference as what
we said to each other
during dinner. And that's where the feeling of a movement, or that I
wasn't alone, came about.
[This feeling of] connectedness, that there were people in Quebec, and
there were people in
Puerto Rico and in England and there were people all across the U.S.
gathered together saying
the same thing over dinner. It was like, I thought I was the only one
who thought this." The importance of
mutuality expressed here shows similarities to the fourth phase of the
heroic narrative. Even with less dramatic survival stories to share,
the experience of solidarity
and mutual recognition provides a powerful turning point in the
development of personal and
resistant identity for movement activists.
Politicization:
Making
Demands for System Change
In this fifth phase of
the heroic survivor narrative, an individual may choose to become
politically active and work for change. This politicizing awareness may
develop from the sense
of mutual recognition, survivor status, and collective identity. It may
bring the survivor identity
more strongly into the picture, with an emphasis on the experience of
marginalization,
disempowerment, and a negative view of abuse within the treatment
system. It also may
involve working toward development of alternatives and reforming the
system to meet the
needs of its recipients, with a more consumer-oriented focus. Yet these
are not mutually
exclusive identity orientations. Activists differ in their views of how
to exercise power, for what
reason, and with whom, when they talk about working for change. "And I
always go into
things where, if you allow for negotiation, I'll negotiate. But I
really
don't know how to be intimidated. It's like no matter what your
station, I'm your equal, and we
may have different levels of knowledge but that doesn't make you any
better or your titles or
your degrees or whatever. And I always make sure that when I go I look
as professional as
anyone else in the field. And then I'm fortunate that I can use words
well."
"So, I saw other people
not being treated right, and I saw patients helping patients, and I saw
myself helping patients as well as other people, and us teaming
together."
In this process of
politicization, the survivor aspect may intertwine with the consumer
identity,
or may move beyond it. Both are activist identities and both are
working for change. Also, it is
crucial to recognize that people move and shift along this
consumer/survivor continuum over
time in both directions, as illustrated by the interviewees and in the
larger movement
community. It is not a step-wise process of unidirectional change.
The
process of
politicization ranges from seeing the issues in terms of power and
definition, to
taking action and working to create change through various means. There
were varied responses
in the interviews related to personal involvement in the movement and
making change in that
way. Not everyone involved in advocacy at the personal, local or
regional levels is also participating in national movement activities:
"I've been real
hesitant to go on a national campaign, or even networking on a national
level. I
don't know why. I don't want to say it's futile, but I guess I don't
have a lot of expectations or
hope for it. I don't think there's a lot of understanding for what I'm
saying. I honor those that are
able to make inroads and changes through the political process or the
activist process, but it
doesn't pull my heart. Getting a voice, and getting a voice for my
experience, that is what pulls
my heart.
Yet other advocates
found their strength through participation at the larger levels: "I
tell you
when I went to the first national conference that's where I met all my
contacts. Didn't know
anybody. I got off that bus, met _____, I met them all there. And I
just shook hands, I was very
outspoken to get to know people in the movement. That's where I'm at."
"[I was] drawn into it,
asked to participate. Went to my first consumer conference, and that
was quite an experience. It was an opportunity for me to feel included,
if you will, in the bigger
picture. And that's when I met ___ and she became my mentor from that
point on. And I guess
my need was to become like her."
The
Correspondence of Narratives
The five-phase
framework of the heroic survivor narrative corresponds with the
experience of
ordinary activists. Each of these phases represents opportunities for
resistance, and individuals
will make their own choices about how to enact these moments in their
personal lives. They
may resist while in treatment, or seek treatment while resisting. A
recognition of the underlying
connections between the survivor narrative and 'everyday' psychiatric
c/s/x experience allows
further understanding of the importance of this narrative to the
movement at large.
The survivor
experiences exist in a range of intensity, from high drama to muted
skeptical
observations. Yet even muted, their presence in various forms is
evident as a force, and as a
vehicle, for developing resistant behaviors and identities at various
points in the survivor
narrative. Betrayal of hope and trust, the experience of disregard and
discrediting, refusal to
incorporate psychiatric labels and expectations, all these experiences
were described and
resisted by the activists interviewed. Their further experiences of
solidarity and mutual support, their varying degrees of politicization
and choices of fields for action, demonstrate the
commonality of experience among people who have been psychiatrized and
choose to resist the
power and authority of psychiatry and advocate for others.
In the
larger movement,
these themes of resistance are re-enacted and emphasized in group
settings that build collective identity and shared experience.
Compelling personal stories are
told regularly at conferences and support group meetings. Witnessing
and testimonies are
published in books, magazines and on the web. They reveal the same
framework. Based on the interview analysis and comparison with more
dramatic (and sometimes legendary) 'public'
stories of survival, it becomes clear that the mechanisms and messages
are similar in the
development of resistant identities along the various individual paths
to activism and advocacy.
The themes that emerge
from the interview data both illuminate and challenge the 'accepted'
(yet still energetically contested) currently-used categories of
experience such as consumer,
survivor, ex-patient, and person-in-recovery that have led to
controversies and splits in the
movement as well as attacks and colonization by outside experts. At the
same time, when
examined in relation to the stories told by the long-term movement
activists and leaders, and to
the established collective identities of the movement, these themes
reveal important underlying
continuities that have enabled the movement itself to survive – as its
members find a
fundamentally shared experience (disregard, damage, oppression) that
goes beyond the
differences to make possible a shared identity with common goals and
purposes.
Terminology
and Labels
Clearly, a simplistic
dichotomized analysis of anti-psychiatry survivors and co-opted
drug-popping consumers is inadequate to convey the complex political
and personal realities of
these activists and their movement. The 'survivor' and 'consumer'
identities are not separate
entities; they can occur simultaneously or serially in the same person.
The interviews revealed
diverse views of the terminology of consumer/survivor/ex-patient, and
the right to self-definition: "I don't even think it's ever been
properly defined. As far as a label, I
don't think we have a label for it. I think we keep defining it in
terms of the medical model.
Mental health consumers, psychiatric survivors, ex-patients, it's not
in terms of my experience.
And if we all reframed the experience, we may find other words.
Teacher, mentor, maybe
there's something to be offered there that we haven't even begun to
explore."
"Survivor to me sounds
like you've been in a concentration camp. Can't stand that. Ex-patient,
I don't like patient. I do not like patient. And ex-patient to me
sounds like, Well, you're too
optimistic that you're never going to go back in. And, consumer . . .
the first time I heard
consumer I said, ‘What in the hell's that?' But, I like that and I like
it more and more. You are a
consumer of services. You can get up and you can go and you can get
treatment wherever. I don't feel like I should be ashamed that I'm a
mental health consumer."
A long-term advocate
saw it this way: "Well, consumer, a bunch of us developed [that label]
to
get rid of the stigma of patient, ex-patient, client, okay. Now, after
the consumer has been in
existence now maybe for fifteen, twenty years, now they're upset with
that. What do you want to
be called? Now at this time, 2000, the younger group should come up
with another thing and
put it through the system. Us old timers were glad consumers was
developed to get away from
ex-patient or client."
This comment revealed
another insight into the term consumer, and the disempowerment of its
current use for "recipients of mental health services": "Consumers is .
. . To
me, that definition has become to mean the helpless, the people that
are
on disability, on SSI [Supplemental Security Income] in particular. And
I've talked to people
that take medications but they're not consumers. They go to therapy but
they're not consumers.
They see psychiatrists personally but they're not . . . It's replaced
welfare. I think that's its
designation."
"Well, having been so
used to wearing so many labels, it really doesn't make me any
difference. However, when I present [at conferences] where I'm talking
about myself, my choice
of word is survivor. When you allow yourself to get uptight about the
labels, then you get
locked into where you can't go forward. So you know, I don't have to
own the labels just
because someone gives them to me."
"I would like to see us
drop the whole medical thing and see where we can go with the other,
with the philosophical, the metaphysical, with the psychological. We
have this political animal
called the DSM-IV [Diagnostic and Statistical Manual]. And that's
political. And that's how
everyone is gauged. But that's not by us, that's by psychiatrists. It
needs to be by us."
References
Anspach,
R. (1979). From
stigma to identity politics: Political activism among the physically
disabled and former mental patients. Social
Science & Medicine, 13, 65-773.
Burstow, B.
&
Weitz, D. (1988). Shrink resistant:
The struggle against psychiatry in
Canada. Vancouver, B.C.: New Star Books.
Chamberlin,
J. (1978).
On our own: Patient-controlled
alternatives to the mental health
system. New York: Hawthorn Press.
Davidson,
L. (2003).
Living outside mental illness:
Qualitative studies of recovery in
schizophrenia. New York: New York University Press.
Farber,
S. (1993).
Madness, heresy and the rumor of
angels: The revolt against the mental
health system. Chicago: Open Court Press.
Foucault,
M. (1970).
Power/knowledge: Selected interviews
and other writings 1972-1977.
Ed. C. Gordon. New York: Pantheon Books.
Funk,
W. (1998). What
difference does it make? (The journey of a soul survivor).
Cranbrook,
B.C.: Wildflower Publishing.
Goffman,
E. (1961).
Asylums: Essays on the social
situation of mental patients and other
inmates. New York: Anchor Books.
Grobe,
J. (1995).
Beyond bedlam: Contemporary women
psychiatric survivors speak out.
Chicago: Third Side Press.
hooks,
b. (1989).
Talking back: Thinking feminist,
thinking black. Boston: South End
Press.
Mahler, J. et al.
(1997). Letters: Taking issue with taking issue: "Psychiatric
survivors"
reconsidered. Psychiatric Services,
48, 601-605.
McCubbin, M. &
Cohen, D. (1996). Extremely unbalanced: Interest divergence and power
disparities between clients and psychiatry. International Journal of
Law &
Psychiatry,19,1-25.
Millett,
K. (1990). The
loony-bin trip. New York: Simon & Schuster.
Morrison, L. (1998).
Communicating with each other: For a change. Report on the Pittsburgh
Dialogue on Mental Health Issues. Western
Psychiatric Institute &
Clinic, unpublished report.
Morrison,
L. (2000).
Committing social change for psychiatric patients: The
consumer/survivor movement. Humanity
& Society, 24, 389-404.
Morrison, L. (2005).
Talking back to psychiatry: The
consumer/survivor/ex-patient movement.
New York: Routledge.
Oaks, D. et
al. (2006).
Letters: The evolution of the survivor movement. Psychiatric Services,
57,1212-1216.
Parsons,
T. (1951). The social system.
Glencoe, IL: Free Press.
Rissmiller, D &
Rissmiller, J. (2006). Evolution of the antipsychiatry movement into
mental
health consumerism. Psychiatric
Services, 57, 863-866.
Satel,
S. (2000). How political correctness
is corrupting medicine. New York:
Basic Books.
Scharfstein,
S. and
Dickerson, F. (2006). Perspective: Psychiatry and the consumer
movement.
Health Affairs, 25, 734-736.
Scheff,
T. (1999).
Being mentally ill: A sociological
theory, 3rd ed. New York: Aldine de
Gruyter.
Scott,
J. (1990).
Domination and the arts of
resistance: Hidden transcripts. New Haven:
Yale
University Press.
Shimrat,
I. (1997).
Call me crazy: Stories from the mad
movement. Vancouver: Press Gang
Publishers.
Smith.
D. (1987). The
everyday world as problematic: A feminist sociology. Boston:
Northeastern University Press.
Susko,
M. (1991). Cry
of the invisible. Baltimore: The Conservatory Press.
Tomes,
N. (2006). The
patient as a policy factor: A historical case study of the
consumer/survivor movement in mental health. Health Affairs, 25,
720-729.
Torrey,
E. (1997).
Taking issue: psychiatric survivors and nonsurvivors. Psychiatric
Services, 48, 143.
Notes:
Segments of
interview data and heroic narrative framework have been previously
published in Morrison (2005)
Institutional
Affiliation and Correspondence: Linda J. Morrison, Ph.D.,
Assistant
Professor,
Department of Sociology & Anthropology, Oakland University,
Rochester, Michigan, U.S.A.
48309. lmorriso@oakland.edu