Radical Psychology
2006, Volume Five


A Matter of Definition:

Acknowledging Consumer/Survivor Experiences through Narrative


Linda J. Morrison

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


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