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South Carolina Client Network: An Initiative to Organize for Respectful, Client-Delivered Services
STRUGGLING WITH STIGMA
Medical Model Language Reinforces Stigma Anti-Stigma Site Featured by CMHS
Struggling with Stigma: Where Do We Start? Notes Toward a New Personality
Struggling with Stigma: Further Dialogues Struggling with Stigma: Articulating Problems
Struggling with Stigma: Values in Care/Advocacy Struggling with Stigma: Biggest Impediment
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Stigma Is Social Death

In 1993, Education for Community Initiatives of Holyoke, MA, published a monograph by Deborah Reidy titled "Stigma Is Social Death." That title sums up the impact of stigma and discrimination on the lives and self-esteem of mental patients whose psychiatric histories become public knowledge after they are hospitalized (thus removed from their communities, work and social/family contexts) or prescribed psychiatric drugs and therapy for which workplace health insurance must pay.

The fact that repeatedly emerges in Reidy's study is that stigma surrounding a mental illness diagnosis is social death for the patient, leaving the individual vulnerable to discrimination and rejection in every area of the national social and political process. Since 1993, little has changed. Clients of mental health are rarely represented on board or commissions setting policy and designing services, and ex-clients are struggling to survive financially and emotionally because they are subjected to social isolation and discrimination that prevents reentry into meaningful work, community activity or political effectiveness. Until such persons are given seats at the table where mental health services and policy are designed, it is unlikely their marginalization or the entitlement drain on government treasuries will change. It is peculiar and ironic that mental health services and practices are crafted by others who have no knowledge of what would be most helpful, most healing, most beneficial, most conducive to promoting self-determination...and, in the long run, most cost-efficient.

Reidy says, "Stories from stigmatized persons tell of painful experiences of being excluded, rejected and discriminated against, often through hundreds of subtle day-to-day interactions. Further, people's experiences indicate that many stigmatizing occurrences are related to attitudes and practices occurring within the mental health system itself."

Commonly cited by the 46 clients and ex-clients Reidy interviewed as stigmatizing are 1) absence of challenge of orientation to growth in mental health settings 2) inadequate provision of information by mental health professionals based on assumptions that clients are incapable of making informed decisions 3) invasions of privacy by mental health providers 4) power and control imbalances between mental health professionals and patients 5) regimented and de-individualizing practices in both community and institutional settings 6) isolating people from ordinary life and a larger society even when they are not dangerous to themselves or others 7) devaluation of diagnosed persons as deficient in human qualities and ability to determine their own needs, develop their own ambitions or contribute to society.

Reidy cites three main main causes of stigma, including a) fear of differences, the future and the unknown b) stereotyping, a result of the human tendency to categorize without questioning and c) social control, an aspect of stigmatization that preserves the existing social hierarchy, maintaining stigmatized groups as inferior in social status and thus socially and economically exploitable.

Coding people in terms of categories instead of specific attributes allows people to feel that stigmatized persons are fundamentally different, thus establishing greater psychological and social distance. This devaluation generates both social isolation that demoralizes and discourages as well as shunning in the workplace, which results in poverty and dependence on entitlements that drain the state and national budgets in areas of Medicaid, Medicare and housing costs for persons who are essentially unwelcome in competitive employment situations once their diagnoses become public.

There is a difference between what mental health professionals call "internalized stigma" (feelings of stigma) and actual stigma. Actual stigma is caused by imposition of social control or restrictions in social or physical mobility accompanied by barriers to opportunities that allow individuals to develop their actual potentials. Images associated with stigma are strongly negative and convey messages of illness and death, criminality, worthlessness, incapacity and general deficiency.

Ron Thompson, one of the study participants, said, "I don't use the word stigma. I use discrimination." Another participant said, "Stigma can be defined as oppression." Some sources of stigma cited by respondents included family, the media, friends, the job market, the mental health system, reduction to disabled status for lack of innovative programs aimed at integration, the Vocational Rehabilitation system's practice of secluding mental clients in sheltered workshops, enforced poverty and a general, historical negative public attitude.

Most frequently cited in the study was the disinterest of mental health professionals in the opinions, choices and preference of the persons purportedly helped within the system. Perhaps this historical tendency to define labeled persons negatively is inevitable since their opinions are not solicited when plans and policies are made concerning the services and delivery modes that most affect them. "The greater the involvement in the system, the greater the stigma," said Bill Butler. Most diagnosed persons are involved with the system only as patients in need of custodial care or management rather than full human beings with good insights about what services would assist them to integrate into their communities and become contributing citizens of a larger society instead of people hiding in fear of coercive treatment, rejection in the marketplace, shunned in their own neighborhoods for no other reason than entanglement with the mental health system.

The stigma within the system boiled down to power issues...especially forced treatment that robs people of their liberty, privacy and choices. A crucial scarcity of comprehensive voluntary community services and an emphasis on acute or long-term incarceration of persons deemed dangerous by virtue of their differences appeared to be the unifying factor.

"Where there's no coercion, there's no stigma," one respondent observed. Many said that an array of voluntary services...peer support, clubhouses, supported employment services with internships and job placement components, aftercare with attention to housing and employment needs...would mitigate the shame and stigma of seeking help, encouraging more people to seek services in a crisis or even beforehand. The threat of forced treatment or no treatment, the co-optation of treatment plans by mental health professionals were also cited as sources of stigma. One professional who participated in Reidy's study spoke of tension between "the therapeutic agenda and the custodial mandate" that is historically inherent in the culture of the mental health system.

Another respondent said, "It's harder for people to improve their quality of life if they can't make it in the society where the rewards come from. Mental health centers reinforce the tendency for people to drop out, stay out, to disengage." The tendency of mental health systems to segregate its clientele from ordinary community life contributes to another of the major effects of psychiatric labeling, lowered expectations, by depriving them of opportunities to cultivate the skills and self-confidence they need to function in a larger society. Thus, mental patients become viewed as people with no future and little to offer. The costs in terms of human resources and tax dollars is becoming burdensome, but lack of client participation in planning and carrying forward an agenda of nurturing, relevant voluntary community programs (employment, housing, peer supports, treatment choices, alternatives to treatment that harms or limits opportunities) ensures further deterioration of services and continued apathy toward psychiatrically labeled persons as a minority population. As long as this population is perceived as a detriment to society rather than an untapped resource, the discrimination, poverty, waste of resources, misallocation of dollars and poor services will persist.

Carmen Meek said, "The system reminds you of what you can't do, how disabled you are, how ill you are. It doesn't focus on wellness, capability, potential of people." One respondent commented, "The activities in mental health centers were no more than baby-sitting, arts and crafts, basic living skills. They should have vocational services during the day and building socialization skills for after hours."

The results of an approach that pegs clients as useful only for what Pat Risser called "food or filth"? Massive dependency, low self-esteem, low self-confidence and, finally, no hope, according to Carmen Meeks.

The end result for clients is low self-esteem and feelings of hopelessness, alienation and despair at ever integrating into a larger society that deems them less than persons without psychiatric labels...or even deficient in human qualities. As Anthony Lehman put it, "Self-esteem that is very seriously damaged leads to people not trying, trying to kill themselves or being destructive with their lives. They destroy their chances because they're angry and feel so bad."

For along with the feelings of separation from everyday life and activities comes depression and the feeling of being permanently vulnerable to the attitudes that keep mental patients and former mental patients imprisoned in the misperceptions of many professionals and society alike: that all mental patients are dangerous, unreliable, incapable of using intelligence or making decisions or choosing from among an array of choices, provided they are given any choices in what affects them most: housing, employment, treatment plans.

Some respondents in Reidy's study found their solution was getting out of the mental health system entirely, and certainly one choice clients can make is to switch to a private psychiatrist who may be more flexible, more responsive and more attentive to the need for choices. Sometimes it makes a difference when the professional's salary is paid by the client rather than the government, since a private psychiatrist who ignored a client's expressed wishes and needs will not stay in business very long.

Others in the study turned to self-help and peer support, joining with others in similar circumstances to find ways of recovering what is lost...family relationships, social contact, decent employment, housing...when a psychiatric history becomes public.

Behavioral strategies in combination with other solutions often provide outlets for change and growth...doing a personal inventory, joining local clubs or organizations, improving personal hygiene, joining a church, attending a local community college to upgrade skills, placing a disciplined focus on mitigating whatever behaviors or problems generate the perceived "difference" and building a support group from the general community.

Most participants in the study hid their history of psychiatric involvement, although some declared that stigma would never be adequately addressed by society or the mental health system as long as clients are forced to conceal the stories of their lives in order to survive: to hold decent jobs, to make friends, to participate in political and social activities where background checks are performed or the dominant culture is leery of persons with prior psychiatric histories.

When people have more choices to exert some control over their lives, stigma is reduced. Existing programs often limit choices and follow a dependency model that discourages hopes and possibilities of self-determination. More voluntary community services built around the real needs...treatment of choice, support, socialization, adequate competitive employment opportunities, good transitional housing...would go a long way in helping people knocked down by the discrimination that goes with stigma in getting back up on their feet and back into society as taxpaying citizens. Research has always shown that people given choices and opportunities plus the social and work supports to accomplish their goals are less likely to enter the "revolving door" acute care hospitalization syndrome than those who feel hopeless about ever recovering a relatively normal quality of life.

Client participation and leadership in decision-making about programs and even at system level operations might be another antidote to stigma. Right now, interventions to dispel the myths about mental patients and mitigate the effects of stigma are few and far between, so most clients of mental health receive disability and hide from society, unable to secure adequate employment or become full participants in the processes of their own communities. Consumers hired as coordinators and advocates within the system also get caught in double binds because they are more often than not marginalized in that context as well, restricted to making contributions that are trivial at best or devising policies and procedures that offer both illusory choice and reform. Only when people find it necessary or beneficial to perceive the fundamental similarities they share with stigmatized people rather than the differences will we see the beginning of a real solution to the discrimination problem. If the mental health system ever develops a multi-pronged approach to tackling all the barriers...psychological, economic and social...then chances will improve for clients of mental health to achieve the self-determination they covet as much as anybody else.

As respondent Joel Stanley said, "I'm struggling for existence like everyone else...to exist with dignity and hopes, to care out a niche for myself, to live with some enjoyment, to find some people who will treat me decently." These things are elemental needs of all human beings, along with safe shelter and work in which persons can be of service in applying all their abilities to be of some use in a community.

When mental health professionals, the media and society in general will come to this realization, that clients have the same needs and hopes as everyone else, some progress may manifest in the long, uphill struggle for dignity and place that mental health patients face on a day-to-day basis.
 
 
 
 
 
 
 
 
 
 
 
Struggling with Stigma: Values Based Care and Advocacy
Regarding strategy, I've read most of the comments. Some say we need to have a single national strategy while others say that our strategy depends upon our resources and must therefore vary according to local conditions (and everything in between). I have studied the existing public psychiatric system.

One of their favored (one of six national "evidence-based practices") methods of oppression is ACT (Assertive Community Treatment) programs. NAMI (National Alliance for the Mentally Ill -- a family member dominated group) had a national technical assistance center award from the feds for a few years to hype this method of oppression and they claimed it is the most studied method of treatment. The ACT program manual put out by NAMI states such things as hours of business, how many FTE (Full Time Equivalent) psychiatrists and other workers, that people will never "leave" the program (because they'll need it all of their lives due to the episodic nature of mental illness) and other such mechanics of the program. However, what is missing is an overarching sense of values or philosophy.

Therefore, when ACT is operated in place "A" it is implemented as a reflection of the values of the staff who conduct the program. And, when ACT is operated in place "B" it is implemented as a reflection of the values of the staff who conduct that program. In one place, staff may be very oppressive while in the other place, staff might be quite empowering and help people to discover their own power and strength from within. Therefore, to claim that ACT is the most studied method of treatment is a lie because in reality it is a different program in each and every place it is implemented because the values and philosophy come locally.

To study program A and program B as if they were equal is fallacious since it's like studying apples and oranges. What has all this to do with our discussion of strategy? Well, I I think that Andrew and Dennis and Sue (and others) are right on! We need to develop an overall sense of values and philosophy that defines us and our actions. There needs to be some common link between us all.

While Don may be alone in Alaska and Sue may be alone in South Carolina, they can both be driven by the same sense of right and wrong about the system and society. In that context, I don't think it matters what our resources are, how many we are in terms of numbers or what our individual abilities are. We are striving to get to a place where we can have a grassroots congress and to obtain that we need to define our values, much as our forefathers defined such concepts as liberty and justice in their documents.

Part of this defining process is the discussion of who we are, what to call ourselves, identifying the problems of the medical model, etc. But, it is larger than that and I think that's the purpose of this list. I see constant, albeit slow, forward progress all the time. The so-called "medical model" of psychiatry is built upon a foundation of sand because they don't have any "values" to define and support their "right" to oppress us and our brothers and sisters. We'll get there but it is hard to be patient in the face of continuing oppression. Pat
 
 
 
 
 
 
 
 
 
 
 
 
 
Struggling with Stigma: Further Dialogues
I think everything you're saying is on target. I don't see how we develop a work plan without identifying the problem in some form that we can understand. My problem with what you're saying is that you seem to be implying that the self-serving nature of institutional psychiatry is at the root of the problem. I do not think that is the case. I think it goes far beyond that. I think that institutional psychiatry is performing a function in our society where people are valued based on efficiency, productivity, and ability to "function", as it separates out the detritus who don't "make the cut". I kind of cast a bemused look at your phrase "quaint notions of respect for madness". Where do we find these "quaint notions of respect for madness" in the history of Western culture? It seems to me that what we find embedded in Western culture is a basic *disrespect* for madness. There are exceptions in some of the creative and spiritual communities, but it seems to me they are islands in a sea of darkness. The people in charge of the mental health system are not going to change without the application of power. We do not have anything approaching power. We need to be able to have some impact outside of that system. All we can do right now is to make some incremental reforms (maybe) and to chip away at the principles that are "legitimizing" the invalidation and violence implicit in the mental health system. Dennis
ANSWER 1
While the experience, common characteristics of the client culture, initiatives, persons and perspectives of clients *ought* to be heeded and respected, just as madness *ought* to be respected as part of the great mystery of life and the whole human enterprise (and has been so valued in other than Western societies), that is generally not the case when adherents of the dominant culture meet together in board rooms and at closed events to craft laws and policies determining what is 'best' for a population usually segregated and typically tokenized or even silenced in negotiation processes. So I am stymied by the prospect of developing a work plan that will bridge the sociopolitical/economic gap and result in genuine dialogues with the persons who Other the psychiatrically labeled population. sue

I don't think we're going to develop any such work plan. Remember, what Andrew is asking us to do is to develop a "respect advocacy" principle. That's what this work plan is about. This does not mean develop an action plan to change things at the root. That has to be informed by the "respect advocacy" principle, after we have a clue of the base we need to begin from. I don't think we have a clue of even what a "respect advocacy" principle should be. I think we have a good sense of what it is in our experience that requires a "respect advocacy" principle; the "social death sentence" is a basic thread throughout the experience of the psychiatrically labeled. Dennis
ANSWER 2
Dennis is also right in saying the Othering attitudes, the perception of mental patients as less than human, are deeply embedded in Western culture, making the whole population of psychiatrically labeled persons (at least those who are poor and without access to alternatives/legal resources) vulnerable to various exploitative schemes that Thomas Szasz called "human cannibalism." I am not certain where I am going wrong, and I wish someone with more plausible ideas or a better grip on reality or whatever it is I lack would just speak and say, "This is where to go, what to do, how to proceed next." Because I am blocked, stuck, stymied, mystified, perplexed, confused, baffled, etc., about how to bring society around to value the madness experience, as opposed to separating it from the mainstream and socially managing and controlling it for profit and privilege. sue

You are not alone. We all are. I see the "respect advocacy" principle as identifying where we need to begin. It's only a start. Dennis
Struggling with Stigma: Problems and Solutions
Every one of us is involved in some kind of struggle where we are at grassroots levels to make a dent in the dysfunctional and deliberately exploitative way most mental health systems, authorities and adherents are doing business.

Maybe you don't want to hear this, but you are not the only person taking risks as a lone "voice in the wilderness." Every time a client speaks up about possibilities and untapped potentials and new initiatives or answering real needs, there is some agency within the power structure eager to censor or impose economic or political punishments. It is dangerous in most places to be even mildly subversive in publishing the issues and proposing solutions or visions for change because it threatens the way systems build their bureaucracies and acquire privilege and power.

My thinking has always been that the social death sentence could be our common ground. Dick, Roberta and Anna have offered some good insights on that angle as a strategy for bringing a national effort together, as well as accumulating voting clout, which also makes politicians at least suddenly become less hard of hearing in campaign years. Clients haven't managed to acquire that clout yet. Until they do, nothing is going to change.

Some leverage is necessary to level out the parameters for communications and actions, even for local efforts, as you probably realize. Clients who stand up and speak for social change must have something the power structure needs or resources, like voting clout, with potential for upsetting the power dynamics before they will be heard in any public forum or any boardroom where decisions are made.

Right now, the fad is to include one or two clients on a board committee of 14 special interest people and claim clients are thus "represented" when medical model ideologues sit down at the tables to manufacture policies and plans. The arrangements made in the dominant culture can't be changed to policies of inclusion until clients are truly represented in all the institutions claiming to speak for them, until clients have the voting clout needed to sway politicians away from endorsing coercion and infantilizing dependency as modes of "care"...And how to get from point A to point Z remains a mystery to me, too.

Most clients are so brainwashed and superdrugged they don't even realize they are socially dead, having developed a sort of "disability and entitlements are my fate" mentality after being herded into the system and intimidated into hopelessness and compliance. And I don't think the basic conditions and power dynamics are that much different from state to state. I believe the same bullying and intimidation and force and devaluations that occur in South Carolina are also occurring in Alaska and Michigan and New Jersey, etc., because of medical model hegemony and its resultant monology of approach, which is geared toward depersonalization, dehumanization and devaluation of its "objects" regardless of the propaganda pumped out rhapsodizing about "recovery" or "resilience" or whatever the latest deck chair rearrangement on the Titanic might be this year or next.

I'm tired of all the cover stories, hypocrisies, delusions ("Victory over mental illness!" "Eradicate mental illness!") of the dominant status quo, too. I'm tired of being intimidated, bullied, terrorized, behavior managed where I am every time I propose an innovative solution or a common sense approach, every time I point out that so called "mental illness" is part of the whole human experience, has been since prehistory, always will be because there's no single genetic marker and never will be; and as part of the historical narrative of human beings, it needs a place in the whole social and political fabric.

Persons who have experienced "mental illness" down through the age have been honored and given positions of authority and respect in many cultures...as shamans, healers, spiritual advisers, medicine men/women. Even in this country, before the medical model, great leaders who experienced madness and even addiction arose to change history in times of crisis: I give you Lincoln, Churchill, U.S. Grant. And what if Grant had been relieved of command and forced to enter a rehab facility before Gettysburg? What if Churchill, who became dysfunctionally despondent and lived on nicotine and whisky for breakfast, had been institutionalized as unfit to function during the blitz? What if Lincoln had been labeled and force treated for his melancholy while responsible for choosing the leadership of the Army of the Potomac and rallying the nation to remain united in the conflict...And this litany could go on and on.

Most of these adherents of the medical model and members of the monoculture who want to eradicate "mental illness" and differences because that ploy consolidates their authority and prestige have *no clue they are meddling with history as well as human ways of being and the mysteries of personality, character, human potential and integrity.* That makes them very frightening to me, and taking them on completely alone and without backup in South Carolina has not done my social life any good at all where I am.

That's why the external imposition of social death seems to me a little strip of common ground on which to base a principle or two. Sue
ANSWER 1
As I have indicated previously, your cause per se is new to me. But, to me it isn't so different to abused children, other abused family members, or sexually abused victims that are further abused by the "system" from the medical profession, mental health profession, police, court, and penal systems to the legal and judicial systems. Unfortunately, the various rights movements, even though they have gotten attention and even gotten some laws changes, they have not brought respect to the abused and oppressed. The activists who have been out there fighting for "rights" have really been trying to convince others to be "responsible" for treating humans as humans. But, society has chosen to try to kill the messengers and maintain the status quo. I believe there must be a better way and I also believe there is; i.e. move it from the streets to the board rooms. Use the tactics that the agencies use.

That is basically what I meant by creating change from within the communities. Put together all the pertinent information on the problem(s) and the outcomes that are desired. Then, take one community and conduct a pilot program even if everyone involved donates their time. Measure and evaluate everything to the nth degree. Then you are ready to move to other communities. When you can prove successes, you are ready to demand changes. As for killing the medical model for mental health, there are some highly respected behaviorists that will support your position but they probably will not to get involved in an activist movement; however I think they would welcome supporting an effort that doesn't cause people to label them. I have been trying to discourage the medical model for the past 16 years but my efforts have been directed toward preventing people who are suffering from emotional problems from being labeled as mentally ill to start with.

To me they are not mentally ill; they need help in coping with emotions they don't understand. And Don, as for becoming consultants, if all become consultants there won't be anyone to consult to. A consultant facilitates discussions. I think everyone needs to work together to start with. Then, when you have your show ready to go on the road, some should become consultants. Too bad we are so far apart. It would be great if we could spend a day or two holed up somewhere brainstorming and finalizing a plan. Roberta First of all I agree with Don that one strategy will not work for all and change must be made from the bottom up; not the top down.

However, there is an overall approach that works for almost any problem that exists in any community in the world. That is changing a community from within. In recent months I have provided information on how it works to many people including a couple in New Zealand where their major problems are within the school systems and to a doctor in Pakistan who is embarking on a study on how to reduce the incidents of mental and physical disorders and suicides that originate from the people's fear of crime there. He knows he cannot start at the top of his corrupt government because it is the cause of the crime. A model that works is detailed in "Building Communities from the Inside Out: A Path Toward Finding and Mobilizing a Community's Assets" and other publications by John P. Kretzmann and John L. McKnight. Kretzman can be found at: http://www.northwestern.edu/ipr/people/kretzmann.html

This is a model to tackle any problem in any community and covers every possibility. When you first look at it you probably will not believe that it can work for your cause. But it can. I was trained in it about ten years ago and have worked with groups on many problems that people thought could not be solved but we solved them in one community, or county, or state at a time. Our first try was to solve the drug, crime, and social problems in the three worst census tracts in our county. I worked on the first one. When we got local citizens into a church for meetings, it was amazing. In a area where we didn't think we had resources to deal with any of the problems, we found 12 pages (single-spaced) of resources available that the people there just didn't know how to access. Then we identified the problems and established a schedule for solving them.

We were amazed when we got a three-year grant of over $300,000 a year to pay for making the changes and we got our local state representative and senator to introduce some changes to laws which were eventually enacted. Since then I have worked on a number of such projects. I currently sit on three workgroups (Child Abuse/Neglect, Substance Abuse, and Adult Outcomes--helping adults between 19 and 55 to become self-sufficient). We meet with residents in a community and identify the problems. Then we identify what assets (resources) are available and what are needed; then develop a plan of action with target dates.

This is an assets-based model (as opposed to a risk-based model). Assets are those resources you have available or still need to accomplish your goal. Assets may be individuals in a community, organizations that believe in your cause, etc. You need to first identify the problem so you can hand it on paper to the people you invite to your meetings, particularly your political appointees because you want their support for your cause. Just writing letters to them do not work (usually). They need to be at a meeting and hear the victims talk, watch them cry, etc.

Paragraph 1 of the paper model I submitted for identifying the problem can be a start. The information that all of you have plus what you learn from the local citizens in your meetings will provide more of the discussion, conclusions, and recommendations. And, you now have a support group behind you in your own community. If I can help any further in this area, let me know. Roberta
ANSWER 2: BIGGEST IMPEDIMENT
 Roberta: You are correct. The mental health system generally ends up retraumatizing anyone entangled in it who has experienced trauma, abuse, spiritual or values crisis.

The reservation I have about this community coalition approach is that most efforts to gather what is called "broad based community coalitions" to tackle problems...are generally comprised of experts, professionals and others who uphold the status quo because it benefits them. If the issue tackled is reduction of stigma against labeled persons or any other mental health topic, then the leaders in such an effort need to be the labeled persons, but when the broad based coalitions form, there might be 20 special interests represented with one token client who isn't even representative of the diversity in the client culture.

So only when the representation problematic is equitably resolved in the board rooms is this move to the board rooms viable as a social change strategy.

Also, it is true that most labeled persons need assistance understanding the roots of their confusions about values and spiritual concerns...I have real problems with treating so called symptoms as something fearful, alien, dreadful and undesirable and waging campaigns to stamp them out as negative manifestations. Maybe they are calls for help. Maybe more than that they are indictments of a society that routinely practices familial and institutional violence, abuse, oppression and calls it "help" or calls it "functional family dynamics" or even "normality."

Of course, everyone can use help sometimes coping with emotions they don't understand. But what about the accountability of society itself, where bullying, intimidation, corrupt dealings and doubletalk are actually regarded as leadership qualities and admired in practice? My objection here is looking at an individual in isolation and saying, "You need help coping with *your* emotions." After that is accomplished, what help is available for coping with a larger culture where violence, force, greed for power and prestige and intimidation are commonly practiced and consensually endorsed?

And if the surround is unwholesome for persons who don't get labeled and fed to the system, it is positively and absolutely hostile for those who do get fed onto the assembly line. The old homily about you can only change yourself, not others, won't hold water anymore. To be socially constructive and just, the accountability and opportunities for positive change must become a two-way street. At some point, the perpetrators must also be called to account for the harm they do by practicing devaluation politics. Which brings us to the other old homily: The light bulb has got to want to change. Sigh.

You said, The activists who have been out there fighting for "rights" have really been trying to convince others to be "responsible" for treating humans as humans. But, society has chosen to try to kill the messengers and maintain the status quo. Where I am, the advocates themselves segregate clients from polity processes and cater to special interests. Until that is changed and clients are fully represented, not tokenized and marginalized in the dialogues, broad based coalition is just another phrase meaning, Separate and silence the exploited population from significant participation. Until that paradigm is radically upset, no progress is possible, and the primary voices will be diluted in a self-serving, special interest mish mash.

Discouraging the medical model is truly a lost cause when there are no clients...or only one, for the *appearance* of following agency inclusiveness guidelines... in the board room advocating for movement away from the acute care revolving door syndrome and toward community based services operated on underpinnings of respect, arrays of choices and clients working side by side with professionals as equals in the struggle to salvage lives from the current systemic low expectations.

People are or should be assets, and mental health clients, traditionally perceived as detriments, can be positive agents of change, given opportunities. Since opportunities are generally not "given"...I suspect it's up to us to make them happen. And what Pat said about programs and actions operated without underpinnings of values is also true. Where clients are not valued, what occurs is more force, more drugs, more low expectations and more dehumanization. That's why, for me, identifying values is a first step positive step toward organization. Without those values and principles, it's what Don calls shifting sand...or worse, quicksand.

One value for me is acceptance. Yes, a person may be exhibiting bizarre behavior. But the patient is also always right. Under all that is a history, a narrative, a story, a recurring pattern of something so painful that the bizarre behavior becomes a way of escaping consensual reality.

Consensual reality isn't all it's cracked up be, especially in a world where the dominant culture is "progressively" demanding more and more homogeneity, becoming less and less tolerant of harmless deviance, investing more and more in labels, force and drugs to control what doesn't fit the parameters of what Dan Fisher called a "monoculture." Western society is moving toward agendas of punishing diversity...social and ecological and biological diversities all together. In the final analysis, society will pay a great price for these campaigns to eradicate differences. The creative thinkers, the great teachers, the great writers, the great humanists, the great visionaries, the great problem solvers, the great technicians, the great servants of human kind are being shuttled down the assembly line of chronic, career mental patients, and the broader society has no clue what it loses by punishing the failure or inability to conform.

Freedom is not an idea, it is not even a protection, if it means nothing more than freedom to stagnate, to live without dreams. - Adlai Stevenson

The aim of most therapies, treatments and the medical model mode are to force the object of attentions to conform, to adjust to a consensual reality that is sometimes humanly impossible to negotiate, understand or condone because it so egregiously imbued with violence, doublespeak, hypocrisy, crass self service, and the list goes on and on. My value is acceptance, not adjustment. Only at the point of being accepted, feeling safe and knowing one will be believed and included can any healing begin. I guess my point here is that madness is often more honest, healthier ( oddly), safer (oddly) and far less conflicting than adjustment to conformity with a social surround that is pernicious, build on foundations of greed, power and devaluation politics.

Part of our values, to my way of thinking, might be *celebrating* differences and cherishing diversities and somehow educating society to do the same before the whole planet becomes a totalitarian regime, as is the current trend. To stagnate and live without dreams, for example, is unacceptable. To be *forced* to stagnate and live without dreams is even less acceptable. It is frankly not tenable.

There's a psychiatrist, Elio Frattaroli, who wrote a book called "Healing the Soul in the Age of the Brain." He points out that just as the swelling and bleeding of a wound indicate the body's endeavor to heal itself, psychosis and severe depression and other special interest manufactured labeled behavioral categories with their litanies of symptomologies are the spirit's efforts to heal itself and call out to others for support in a toxic and hostile environment. He contends that what medical model psychiatry calls "symptoms" are actually expressions of spiritual and psychological crisis that are opportunities for growth and creativity *if given nurturing circumstances and acceptance rather than punishment and social distancing.*

Dick, Roberta, Anna have suggested gathering our ideas and solutions into a document, collating and using the product of our mutual efforts as talking points that could become position papers on principles for organizing. With some heavy editing after collating, we could generate a whole new set of values...another lens, one that is positive and not pejorative, through which madness and its mysteries might be valued for their wisdom and even their rationalities, considering the sickness of the culture than practices oppression and attempts eradication of differences for ignoble purposes.

I'm thinking of what Hannah Arendt said of the holocaust, of which thousands of mental patients were the first victims. She said terror is not the fear of physical death. She said the *essence* of totalitarianism is elimination of differences, so that its targets become puppets of the totalitarian regime, divested of the volition and spontaneity that are fundamental human qualities. She said totalitarianism and terrorism happen when particular groups are singled out as *specimens* of the animal species, human beings, and when such trampling of responsible personal autonomy is justified by some seemingly inexorable law.

For Hitler it was fraudulent laws of genetics promoting racial superiority, not far away on the scale of reductionism and genetic determinism practices by most medical model adherents. For Stalin, it was fraudulent laws of economic class struggle, also not far away on the medical model scale of socioeconomic determinism.

My point here is that medical model assumptions amount to a *totalizing secular ideology.* Refuting these beliefs so entrenched in the dominant Western culture for so long is perhaps something we might consider taking on as a project through writing the talking points and position papers. Sorry this is so long. I have wrestled a long time with this, and Dick's idea of writing a paper combined with the idea of setting forth values was like a light at the end of a tunnel that wasn't, after all, an oncoming train. To do this, I believe we should continue speaking of our values and of our wishes, hopes, dreams, successful efforts to change attitudes and practices. And I believe we need to expand and deepen our discussions of social death, its impacts, the possible consequences for the broader society of condoning social death and condemning human beings on false pretenses to life at the margins of the whole human enterprise. Sue
Sociopolitical Realities
by Sue Poole

The ironies of advocacy do not escape most psychiatrically labeled persons, who cannot change the current trend that places delineation of the needs and priorities into the hands of a dominant monoculture of special interests who actually profit from the proliferation of mental illness and the expansion of the mental health system they are supposed to be monitoring and reforming.

The contemporary expression for a collection of special interests claiming to speak for psychiatrically labeled persons who are almost nowhere in evidence on their boards and committees is "stakeholders." And mental patients are apparently "the stake."

For example, mental health advocates deplore stigmatizing language and claim to genuinely believe there is a difference between referring to "the mentally ill" and "mentally ill persons." The distinction here is too fine to register in the thought processes of anyone even quasi-intelligent. Because the stigmatizing element is the expression "mentally ill" itself. How this is framed, whatever the context, the terminology of "mental illness" or the identifier "mentally ill" is going to conjure up negative impressions. No niceties of language use can erase all the grotesque and violent images that the phrases "mentally ill" and "mental illness" happen to entail. So let's be real and talk some truth for a change.

If you have a psychiatric label in this culture, you are considered many things, none of them positive. You are inferior. You are deficient in essential human qualities. You are dangerous. You are unpredictable. You are unreliable. You are unable to perceive reality accurately. You are stupid. You are incapable of achieving goals you have set for yourself and must be managed and observed. You are inarticulate. You are unable to express your viewpoints or negotiate in the public political arena. You are considered alien, strange, outcast, undesirable. You are a non-person. You are fit only to collect disability and pay the government insurance back into the system that debilitates you through hopelessness and demeaning treatments into remaining that way, below the lowest rung of the social ladder, deprived of voice, status or influence in the political and social processes that determine your ultimate destiny. Systemic expectations for you in general are a cardboard box in a back alley and a potter's field at the end of your other-defined miserable and worthless life.

Those are sociopolitical realities. Here are more. The mental health system's adherents make lots of money and enhance their own professional status by exploiting your distress and differences. They enhance and entrench their social status by destroying yours. The system uses force to project a false image of dangerousness and criminality of the psychiatrically labeled. This enables them to justify incarcerating you until your insurance is gone. This enables them to surround your house with 30 police officers and throw tear gas at you and shoot at you with rubber bullets, cut off your electricity and water, throw hamburger wrappers and styrofoam cups in your driveway and then handcuff you and drag you off for an expensive observation period, for which dubious service the state considers you the payee. The mental health system deliberately disempowers and impoverishes you because that enables social workers to get you qualified for disability so you can receive Medicare and Medicaid so the system can get paid for defining your reality and determining your future.

By thus creating a permanent underclass of undesirables, the system justifies its expansion of both influence and turf. By keeping you emotionally traumatized, physically stunned with damaging drugs and convinced through propaganda that you are mentally ill, without sufficient insight to identify your own needs and manage your own affairs, the mental health system disables you for its own ends.

So-called advocacy agencies use you. Advocates build lucrative careers on the back of your pain and feelings of frustration about stigmatization, which the alleged advocates practice themselves by using the language of segregation: normal equals us; defective, dangerous and unreliable (mentally ill) equals them. The madness establishment manipulates and distorts information about you to ensure that you can continue to be used for purposes of profit and elevated social status for its professionals and many opportunistic "normal" advocates, who regard you with disdain and contempt as genetically defective accidents of birth to be controlled, managed, confined, intimidated or otherwise bullied into acquiescence.

The goal of most mental health treatments and advocacy are promotion of your adjustment to the manufactured "reality" of your "mental illness." Whether you have chosen to accept or reject that identity is inconsequential in the scheme of things. Once you have a psychiatric history that is publicly known, people who call themselves advocates actually believe they have the right to come into your home and refer to you as "mentally ill" or speak of your "mental illness" in correspondence. These impositions of an unwanted identity upon you are accomplished without hesitation or a second thought by members of a monoculture claiming to be promoting mental health and achieving "victory over mental illness" which is a social construct, not a medical contingency. There is no empirical evidence of any structural or molecular anomaly or biochemical defect to serve as an authentic etiology, yet professionals and advocates blithely apply the label "mental illness" and its many permutations as though brain disease or chemical imbalance were established fact, which they are not.

And further claiming their mission for "them" (the mentally ill or mentally ill persons, what is the distinction, please?) is "...respect, dignity and the opportunity to achieve their full potential free from stigma and prejudice." While chattering mindlessly about mental illness, which ipso facto generates an "us/them" demarcation rendering balanced dialogue and equitable communication impossible. If the person so defined by the dominant monoculture complains, protests, offers a differing critique or attempts to introduce a novel idea, approach or innovation, all such behaviors can be quashed as evidence of the person's "mental illness."

And if the behavior cannot be stuffed into some categorical description of the DSM IV and is sufficiently threatening to the status quo that provides these advocates their status and livelihoods, it can be dismissed as a "personality problem" stemming from imaginary experiences of imaginary stigma. Most mental health advocates are solid middle class citizens with M.Ed. and M.S.W. degrees who have never in their lives been disqualified from anything on the basis of an externally imposed label and wouldn't know stigma or discrimination if it bit them in broad daylight, yet they chant the mantra of "respect, dignity and the opportunity to achieve their full potential" while cooperating wholly with the mental health authorities to reinforce policies of coercion, social and political segregation and forced drugging as helpful treatments when persons are in emotional crisis and most in need of kindness, safety and acceptance to come through on the other side without being scarred for life by assault on their persons by police action or degrading confinement, spoliation of identity and unnecessary confinement.

The mental health system, including the advocacy outfits, disseminates propaganda claiming all psychiatrically labeled persons have diseased brains. Then the mental health system and its adherents claim people with diseased brains should not be stigmatized or shut out of society. Then the mental health system proceeds to sequester you, isolate you socially and abrogate your rights by denying you due process in court proceedings through which probate attorneys profit by not defending you or attempting to obtain your release. The mental health system and mainstream advocates say stigma and discrimination are wrong. The mental health system then proceeds to incarcerate you, projecting an image of criminality and dangerousness, and justifies this injustice by declaring that you might harm someone, although you have never in your life committed an act of violence or threatened to do so. Lawmakers are lobbied by drug companies, mental health departments and advocacy groups to make laws more and more repressive, so that being confined and force-treated in your home is a real possibility. Drug companies and mental health departments profit by the passage of more and more repressive laws.

Family oriented advocacy agencies with one token mental health client on the board and one token mental health client on a committee get money from the mental health system to hire "normals" who help the mental health system devise more and more humiliating and debilitating policies so this mess can be perpetuated, and "normal" advocates can be paid for negotiating political deals that benefit the system, the advocacy agencies, the drug companies, insurance companies, managed care operations...almost everyone but the consumers who are merely objects for exploitation in this giant game of fraud and deceit. You keep a lot of judges in business, too. Of course, laws mandating that you can be confined, observed, drugged, insulted and spied upon in your own domicile are based on the assumption that you even have a home after several years of neuroleptics, a lot of debilitating polypharmacy, several career losses because of unnecessary confinements and years of clinicians' assaults on your identity as a full human being with needs, hopes, dreams, goals and talents to offer society. While advocates chatter about your "mental illness" and your "personality problems" and your "symptomologies" and your need to adjust to a spoiled identity, comply with substandard or damaging treatment, agree to serve as the lone token consumer on a board made up of 1) family members indoctrinated into systemic hopelessness and 2) mental health professionals with a large stake in keeping the assembly line moving along and 3) other mental health advocates, also with a substantial career stake in keeping clients of mental health "services" dependent, compliant and generally silenced on issues of policy and social or community supports.

In May, all these stakeholders get together for a long walk demanding insurance parity to pay for more coercive treatments and chanting mantras about the wrongness of the stigma they themselves are generating by excluding the client perspective from all deliberations on policy and needs. Lawmakers believe what the drug companies, mental health professionals and advocacy groups tell them because once you have been locked away, your word is no longer valid in the dominant culture. Nothing you say, think or report has credibility from that point on. You are a nonperson in the eyes of the law, the system, most of the people claiming to advocate "for" you and society after being involuntarily incarcerated. The mental health system calls this help. The government calls this "protecting the public." From YOU.

Lawmakers do not solicit your viewpoint for all the preceding reasons. And also because, even though you still retain the right to vote, you do not belong to a national organization with clout and numbers and money to contribute to campaign funds and drug research and human experimentation and medical school propaganda about how your brain is diseased and must be "fixed" with disabling drugs and police force. You have not banded together with other oppressed persons in sufficient numbers to make an impact on election outcomes. You can't stuff anyone's campaign coffers. You can't fund any research. You might be allowed to volunteer your children for a twin study organized by E. Fuller Torrey, but persons perceived as "normal" are the ones who usually indulge in that kind of blatant exploitation of their offspring. Why should anyone care what you think or need as long as the system proliferates, the drug companies thrive, the insurance companies benefit, the advocacy agencies that claim to speak for you endorse this incestuous mess of conflicts of special interest, the propaganda machine keeps pumping out deliberate lies, the insurance companies keep paying for unwarranted confinements and abusive "treatments" and biopsychiatry perpetuates the notion that your brain is defective and diseased? Meaning that YOU, by extension, are defective and diseased and, therefore, worthless to fulfill any function but that of cash cow for the exploiters.

You may be happy with these sociopolitical realities. You may not be happy with them. It really doesn't matter, because you are mentally ill and little more, in the larger scheme of things, than a pawn in the game of power and greed for several industries that would collapse or suffer serious diminution if they actually made strides toward helping you achieve self-determination and social integration, if that should be what you desire.

 

 
 
Medical Model Language Only Reinforces Stigma

The Relationship of Causal Beliefs and Contact with Users of Mental Health Services to Attitudes to the ‘Mentally Ill
By John Read & Alan Law.
International Journal of Social Psychiatry, 45 (3), 216-229.
Researchers John Read and Alan Law have replicated the results of previous studies showing that there is a relationship between belief in the “illness” model and negative attitudes toward people with mental illnesses — including self-stigma on the part of these individuals.

Their study has also demonstrated that the idea that mental illnesses have a psychosocial basis — i.e., that they are caused by environmental stressors, such as trauma or poverty — is associated with positive attitudes and reduced stigma. In addition, the amount of contact with people who have mental illnesses is an even better predictor of positive attitudes than acceptance of psychosocial causal beliefs, the researchers found.

The idea that mental illness is an illness apparently just fuels the stigma of psychiatric disorders, which are linked in the public’s mind to the image of people with such disorders as violent, unpredictable, and unreliable, according to Read and Law. They offer the following quote from a study by Hill and Bale (1980): “Viewing a person’s behavior as being to some extent under the person’s control and therefore somewhat predictable seems to be a prerequisite for meaningful interaction with a person. The notion that psychosocial problems are similar to physical ailments creates the image of some phenomenon over which afflicted individuals have no control and thereby renders their behavior apparently unpredictable. Such a viewpoint makes the ‘mentally ill’ seem just as alien to today’s ‘normal’ populace as the witches seemed to fifteenth century Europeans (pp. 289, 290).”

Yet, despite evidence that attempts to counter stigma by means of such slogans as “mental illness is an illness like any other” have been “largely unsuccessful,” mental health professionals involved in anti-stigma campaigns continue to promulgate this model, Read and Law report. At the same time, they note: “Wilmouth et al. (1987) reported that physicians were the least likely of six community groups to support the building of a mental health facility near their own home.”

Correspondingly, the authors cite a 1980 report by the National Institute of Mental Health, which commented that treatment in a medical setting, by a medical professional, or by “physical treatment modalities,” results in more stigma than non-medical alternatives (pp. 22, 23). This includes internal stigma:

Farina et al. (1978) indicate that although individuals may be able to maintain more self-respect if they blame their problems on biochemical processes, along with this can come the belief that they are more alien, less capable of ever functioning normally, and less acceptable as a friend.

As consumers of mental health services have repeatedly pointed out, the stigma created by the medical model of mental illness also leads to an internalization of stigma where clients may feel their experience is being reduced to biochemistry, leaving them robbed of individuality, complexity and meaning (Campbell, 1992; Lawson, 1991; O’Hagan, 1992).” The authors conclude that it is possible to change attitudes toward people with psychiatric disabilities for the better, “at least in the short term,” and that, to accomplish this, information about the psychosocial causes of and treatments for the disorders commonly called mental illnesses may be helpful.

They also suggest that anti-stigma campaigns avoid traditional medical model messages. In addition, they conclude, “[t]he public needs to be explicitly told that there is less to fear from people living in the community with psychiatric histories than from other groups of people, such as males in general.” They add, “it seems essential to involve psychiatric survivors and current consumers of mental health services in any education campaign.” Finally, they suggest that different anti-stigma strategies might be used for different demographic groups, including age and gender.

Postscript by John Read, Ph.D.: We have since replicated this 1999 study twice:

Walker I, Read J (2002) The differential effectiveness of psychosocial and biological causal explanations in reducing negative attitudes toward ‘mental illness.’ Psychiatry, 65, 313-325.

Read, J., Harre, N (2001) The role of biological and genetic causal beliefs in the stigmatisation of ‘mental patients.’ Journal of Mental Health, 10, 223-235.

Also, we have provided an updated review of all the relevant research in this topic in:

Read, J, Haslam, N. (in press, 2004) Public opinion: Bad things happen and can drive you crazy.

In:

Read, J. Mosher, L, Bentall, R (eds) Models of Madness: Psychological, Social and Biological Approaches to ‘Schizophrenia’ London: Brunner-Routledge.

John Read, Ph.D., Director, Clinical Psychology Department, University of Auckland, New Zealand Alan Law, PGDipSci, Psychology Department, University of Auckland

References cited in above summary:
Farina, A., Fisher, J.D., Getter, H. & Fischer, E.H. (1978) Some consequences of changing people’s views regarding the nature of mental illness. Journal of Abnormal Psychology, 87:2, 272-279. Fisher, JD & Farina, A. (1979) Consequence of beliefs about the nature of mental disorders. Journal of Abnormal Psychology, 88, 320-327.
Hill, D.J. & Bale, R.M. (1980) Development of the Mental Health Locus of Control and Mental Health Locus of Origin Scales. Journal of Personality Assessment, 44:2, 148-156.
National Institute of Mental Health (1980) Attitudes towards the mentally ill: Research perspectives. Washington DC: Department of Health and Human Services.
Wilmouth, G.H., Silver, S. & Severy, L.J. (1987) Receptivity and planned change: Community attitudes and deinstitutionalization. Journal of Applied Psychology, 72, 138-145.

 
ADS (Anti-Stigma) Site Up at Center for Mental Health Services

Because of all the factors impeding establishment of recovery oriented programs geared to assist psychiatrically labeled persons integrate into mainstream life, the Substance Abuse and Mental Health Services Administration’s Center for Mental Health Services (CMHS) launched the Elimination of Barriers Initiative (EBI) to identify effective approaches in addressing the stigma and discrimination associated with mental illnesses. The EBI will be conducted in eight pilot states over a three-year period to identify emerging best practices in the areas of combating stigma and discrimination, disseminating its findings via the new ADS Center website at Resource Center to Address Discrimination and Stigma .

The South Carolina Department of Mental Health's Palmetto Media Watchers is now listed at the ADS Center site as a resource for addressing stigma in this state. According to information at this site, 70 people across South Carolina are now keeping their eyes and ears open for negative media coverage regarding mental health issues. Their training manual can be downloaded at Media Watch Training Manual.

The prejudices held by many members of society, including the media, mental health professionals and even some persons who advocate for psychiatrically labeled persons, has helped create a discriminatory social climate for persons with mental illnesses, making it much more difficult to sustain employment, find a home, obtain health insurance or achieve a basic quality of life. Palmetto Media Watchers and the ADS Center are seeking ways to help mend shattered lives by reducing the impacts of stigma and discrimination on persons within the client culture.

Systems consultant Deborah Reidy published research 10 years ago citing negative impacts of stigma within the system itself on service recipients who spoke to her of feeling degraded, dehumanized and deprived of choices by mental health professionals who focused on deficits rather than strengths and assets. Although the paradigm is slowly changing, many mental health systems today still rely on the acute care revolving door approach to delivering treatment instead of attending to the holistics of people's circumstances and life paths. In its recent TRIAD report, NAMI deplored the "shameful lack of consumer operated service programs, which are defined as nonprofit support, recovery and active advocacy initiatives in the areas of housing, social networking and jobs.

Dr. Jean Campbell of the University of Missouri is now finalizing the first-ever randomized controlled study on the efficacy of COSPs to reduce the revolving door intakes and the stigma preventing these vital programs from receiving priority funding for best practice and evidence based interventions. Campbell's research and the TRIAD report strongly suggest that consumers deliver services to their peers in a respectful way that uplifts, nurtures hope and aids in restoring lost dignity and self-esteem.

As the Ohio Department of Mental Health notes on its recovery home page section, a sense of hopelessness is often inculcated by mental health professionals who do not understand or promote recovery because they do not believe their patients are capable of independent thought or self-determination. This attitude trickles down into the client culture itself, erecting roadblocks to hope for a brighter future, so that many clients become dependent on the system for lack of a psychosocial infrastructure enabling decent standards of living and freedom from fear and discrimination in their own communities. Low expectations often become self-fulfilling prophecies, and mental health clients are engaged in a nationwide struggle to overcome the barriers to inclusion. Perhaps, Reidy suggests, society itself suffers by rejecting the gifts, compassion and solid work ethics clients can offer.

Services to help people recover housing, friends and jobs are the crux of needful community-based services, but these programs are few and far between because stigma is also a barrier to getting federal and state funding for such services. Resistance to change combined with the stigma and discrimination of being categorized mentally ill makes lawmakers and federal agencies reluctant to devote funding streams to programs that are not proven effective to reduce hospitalizations and homelessness.

It is difficult for many mental health professionals and the general public as well to believe that consumers can manage large drop in centers, spearhead successful employment initiatives, conduct anti-stigma and empowerment trainings, provide police sensitivity education, secure transitional and low-cost housing, act as consultant and trainers for Protection and Advocacy agencies, especially in supporting plaintiffs through the ordeals of lengthy federal class action lawsuits. But there are consumers in COSPs on the front lines doing such work every day, and the results of these services as an adjunct to traditional treatment are now being recognized as emerging best practices for helping people live and thrive in communities of their choice.
 
Struggling with Stigma: Where Do We Start?
If you have an answer to this question, email the webmaster at dsupoole@bellsouth.net

Sue, Before the social death metaphor, I just described the situation this way: Nobody believes me. Vonne

Vonne wrote: "Before the social death metaphor, I just described the situation this way: Nobody believes me."

This is succinct and exactly on point.

What I'm hoping is that we can work a middle ground between speaking with "nobody believing," and speaking so aggressively that nobody wants to listen. 'Social death sentence' indicates it's a shocking problem, but it does not require us to point the finger and blame. Rather it provides the logic of a "social problem" which requires a discussion of finding a "social solution." Plus it recommends a methodology .. respectful discussion .. as the initial/primary interface. Beyond that are the "intractables" of the analog of "affirmative action," where .. details need to be analyzed and .. (ultimately) negotiated.
Andrew

And why would people in power who call all the shots and exploit mental patients to benefit themselves economically, socially and professionally deign to engage with clients in respectful discussion? Or go beyond that to the intricacies of political negotiations? Someone once said, "Power yields nothing without a struggle." It also yields nothing without the application of outside leverage, and most mental patients and their grassroots groups 1) lack credible institutional allies to give them some way of earning respect by association and 2) mere courage to stand up to the systems that bribe them into silence with token positions and nominal respect.
Sue

Sue (and others),
One thing that is really bothering me is the attitude of some of the consumer leaders - especially in NAMI. Almost all the ones that I have had dealings with believe that they are the only ones that know anything, are always right, and an air of superiority over any other consumer.

I was very active in NAMI AK, until I was ousted for nonconformity to "group think". They can say it was other things, but that was what really got to them. I had the audacity to disagree with the president over the question of scientific sampling. She had completed course work for a Phd in biochemistry and I had the course work necessary for a masters in chemistry. Same statistical class.

And then things went down hill after that. I know of others who dare to disagree and soon they are out of favor. Yet, these are the ones (at least up here) that are trying to get consumer run programs going. Someplace in some of the NAMI stuff for consumers, there is a point that says mental illnesses are biochemically based. I guess this is to satisfy the original founders - parents - that they did nothing wrong and their kids have a chemical imbalance. And now NAMI is pushing for programs that test children for mental illnesses. That is one of the reasons I am so glad that I didn't have children and that they didn't have tests like that when I was growing up. I just can't imagine them trying to stifle the creativity of children just because they may think a little differently and have different perceptions. Thanks for writing, Esther

Esther, I needed to answer this...You aren't the only person who cannot "blend" with the monoculture of the medical model. There is absolutely no empirical evidence, molecular or chemical, that "mental illness" is caused by imbalanced chemicals or a diseased brain, yet NAMI long ago got into bed with Big Pharma and the APA and the system and NIMH (which is basically a front for the drug companies) and started pumping out medical model propaganda...And, yes, the motivation was to detract attention from unhealthy power dynamics within families and "blame the brain" instead, so that the parents of NAMI children could appear as social saints putting up with defective offspring and seeking "fixes" from mental health professionals and big pharma.

And as a result, other advocacy agencies have jumped on the bandwagon because it means drug money and system funding to supplement their operating budgets in most instances. In colleges and graduate schools, the medical model is heavily promoted, clinical practice is stressed, research and philosophy of values in providing care and services are denigrated.

The very bad "outcome" is a monological approach to mental health "care"...shut them up, drug them up, spit them out on the streets ruined and traumatized with no social supports and scant networking supports and a new spoiled identity that enables the broader society, including families, employers and friends, push them to the fringes of mainstream polity.

So, now there's a huge monoculture of medical model proponents who are in the "behavior management and social control business" for reasons of 1) greed for power 2) greed for money 3) some sick need to be perceived as "saviors" of the "inferior unfortunate" by keeping them dependent, wrapped in chemical strait jackets and confused about the difference between therapy/love/care and abuse.

Most mental patients have histories of physical, sexual or psychological abuse anyway, and all the special interests in bed with each other only reinforce whatever original trauma/s precipitated their alleged "mental illness." So having been acclimated to abuse and external control, sometimes it requires years of deprogramming or self education to realize...the system is a punitive business grounded in fraud, hypocrisy, privilege and profits.

The purpose of the mental health industry, with very few exceptions anywhere, is to keep patients confused, distressed, stunned on damaging drugs, deprived of choice, intimidated and terrified because it produces jobs for the huge mental health bureaucracy, money for the drug companies, enhanced social status and community admiration for the "savior types" and also jobs and enhanced social status for MSWs and M. EDs and PH. Ds who largely populate the boards and committees of the so called advocacy agencies, where clients are tokenized and bullied into silence by the monocultural trend toward elevating the medical model to the level of science, which is patently fraudulent.

Right now I'm reading a book titled "Psychiatry Can Be Hazardous to your Health." Well, yeah. The basic contention is that so called mental illness is a creative adaptation to realities that are impossible to negotiate, that so called symptoms are actually cries for help and for a social surround that is more accommodating of differences and less enamored of exerting external control. The author, Dr. William Glasser, maintains that normal society is motivated to apply external control, which is a source of unhappiness. And that alleged mental illnesses are creative expressions of unhappiness from persons who have been overcontrolled or abused or traumatized or confused about values or are uncertain about the meaning of existence. And that medicalizing these expressions as "symptoms" and throwing drugs at descriptions of behavior is not and should not be an exclusive solution.

Glasser isn't saying drugs can't be an adjunct to therapy. He's saying the medical model doesn't negotiate the precipitating factors or the crazy making power dynamics that taint most of our relationships in a mechanistic, reductionist culture where values of dominance, bullying, self-service and doublespeak are valued above integrity even in our leaders. He offers some solutions to improve relationships, and one of them is giving up the compulsion to control others. This works, he says, in interpersonal relationships, but probably isn't the answer to changing the control paradigm of institutions and organizations protecting their status quo with a vengeance.

Caring and respecting, not controlling, he says, are the cornerstones of mental health. Amen. He also says external control (and that would include the pressures and coercions of "groupthink") is by far the greatest obstacle to mental health all over the world. He outlines the false beliefs on which external control is based: 1) People don't make us do what we do; we choose our actions 2) It is possible to control and change others, and some persons believe it is their right to do so 3) The belief that says, Not only do I know what's right for me, I know what's right for everybody else, too. (Glasser says this one causes the most damage to relationships and mental health.)

Then he presents some habits that reinforce the control compulsion: 1) Criticism 2) Blaming 3) Complaining 4) Nagging 5) Threatening 6) Punishing and 7) Rewarding the ego of the person who complies with control strategies (bribing) The antidotes he presents are 1) Supporting 2) Encouraging 3) Listening 4) Accepting 5) Trusting 6) Respecting and 7) Negotiating differences (again, good for interpersonal relationships, rarely applicable to large institutions and organizations with top down hierarchies and entrenched policies of behavior management/social control).

While this may seem simplistic, I intuitively believe it's valid. Cultivating the positive habits and reducing enactment of the control compulsion habits would indeed make a fairer world of it for everyone. He's endorsing social accountability at the most fundamental levels, in our personal and family relationships. He does not, sadly, provide any solutions for inducing institutions and organizations to change their control compulsion habits or abandon the intimidations, violence, name calling, categorizing, stereotyping and social distancing used to exert the external controls. It's not just NAMI. It starts with individuals who somehow *need* to control others to make themselves appear invulnerable and obtain more authority and privilege while pretending they are "saviors." Believe me, most advocacy has gone in this direction because the missing ingredient is social accountability to the persons supposedly needing the advocacy. sue

I've been wrestling with "Where do we start?" What respect advocacy principle addresses the barriers to respect inherent in the profit making and political/social principles that drive most mental health care and advocacy? To my way of thinking, there is a large gap between providers and clients in that providers (mental health officials, clinicians, vocational rehab, allegedly normal advocacy groups, etc.) make their *livings* by devaluing and segregating a certain population. So a lot of financial clout and a whole power base depend on *disrespecting* clients of mental health services...i.e., creating situations that make this population dependent (on drugs, on acute care redundancy, on the pronouncements and judgments of medical authorities who are actually practicing social control, etc.)

Once clients are fed into the assembly line of chronic, career mental patients, unless they recover *fast* and get out of the system, they acquire what Goffman called "spoiled identities" and are thereafter tagged as unproductive and defective, Othered into subhumanity and then managed by most of the agencies and organizations claiming to help them. The result for the clients thus segregated and devalued is typically poverty, reliance on government subsistence, exclusion from political and social process that determines the nature of the "care" designed for them and exploitation by everything from clinicians to big pharma to paid "normal" advocates to a host of social workers, counselors, therapists, voc rehab experts and professional organizations whose very livelihoods have traditionally depended for years on the quaint notion that signing them up for Medicaid and Medicare to pay for the demeaning and substandard "treatments" that keep them dependent and isolated is the way to support the huge mental health bureaucracy and its sycophants.

Therefore, generating an open ended, sincere and balanced dialogue with the "helping" professions is problematical because of a certain glaringly inequitable power dynamic. Mental patients have no leverage in negotiation. They can't exactly go on strike. The only commodity they represent in a capitalist society oriented toward productivity is that aforementioned assembly line of psychiatrically disabled, intimidated, dependent and allegedly defective socially segregated subhumans who pay their Medicaid and Medicare back into the system that generates their dependence and powerlessness.

Not only do the professionals generally not listen, they don't *have* to listen or hear, however respectfully the devalued persons present their arguments for some social and political equity and a real stake in planning the care, the institutions and the methods currently used to exploit and control them. The professionals can always medicalize the behavior of the client who objects, however respectfully and politely and mildly, to the contemporary paradigm of total compliance with whatever damaging or potentially harmful regime the power structure deems to be "care." Or recovery. Or evidence based practice. Or whatever the current fad might be.

So. Is there a principle to bridge what is essentially a gap in human valuation and ethics, wherein people's careers appear to depend on keeping a targeted population isolated from the resources to which the power structure has almost exclusive access? Just a few thoughts about how things are set up. What is the bridge for this gap? How to build it? How to reform years of institutional greed, classism, imposition of spoiled identity, phony ideologies, social control mechanisms so entrenched in the consciousness of the middle class and the dominant culture? Don't know the solutions. Sue
Answer 1
You certainly address the social death sentence as created and generated by institutional psychiatry and what passes for the "mental health system", and its vested interest in maintaining this. But I don't think it starts there.

When I was growing up, I was aware of persons in mental hospitals, "mental patients". I thought of them as less than human, people, yes, but somehow people a level below the "normal" ones. This wasn't particularly my thinking specifically, it was embedded in the culture as a whole and it just kind of sank in by default. It wasn't until I landed in the hospital myself, and met some of the most sensitive and beautiful people I'd known in my life, that I learned differently.

Today, most "mental patients" are in the community instead of the institutions, but I think this general idea is still embedded in the culture at large. It provides a ground from which the mental health system is fed out-of-kilter persons who need "help", i.e., fixing, and transforms them into persons straitjacketed and managed as "socially defective". There is something in the way the culture in general relates to "madness" that sets mad people aside, as the "other". It goes back well beyond psychiatry, to the torture and burning of witches, and other forms of physical and spiritual murder.

Where is the idea that the experience of madness has something to teach us all? That we need to respect this and not detach ourselves from madness as part of human experience? That to simply devalue madness smashes all possibility of sorting out the meaning from the meaningless as it is woven together in madness? Yes, madness can be a very scary thing, but we have to deal with many scary things in life. In attempting to invalidate madness as human experience society does damage to the overall meaning of human experience as well as annihilation of the humanness of those who are "othered" as "mad". Where do we even begin to get a handle on this? To me, this is where "respect advocacy" begins. And for myself, I don't have a clue. Dennis
Answer 2
Sue, There is a great book by E. Schur called the Politics of Deviance, that talks about just this issue. His contention (and other more traditional writers like Bruce Link) is that stigma and lack of respect, etc. cannot be changed with a power imbalance, and that gaining power is the essential first step. Now I know people labeled with mental illnesses don't have $, but folks do vote, and can volunteer for politicians, and gain access to power...with political power in the ascendancy there can then be meaningful dialogue with MH professionals. I think if we came at this thing from both angles--meaningful personal contact with other human beings one at a time (NOT aiming at changing MH professionals as a group), and bigger strategies to gain the ear of political leaders, we might stand a chance of making a dent in this thing... Overly idealistic, perhaps, but the best I can think of. Hope you're well, Anna


Notes Toward a New Personality
by Sue Poole and Anonymous
Are the client activists just 'high functioning' people who have gotten involved with the madness system? Or is our business representative of something creative, something that is a positive statement about social being? The conventional personality psychology measures us 'gifted' or not, 'stable' or not, and so forth .. but it misses what is essential to the madness problematic. Which is that however painful and difficult the 'disorder'/'dysphoria' aspect of things, it is in the human domain for people to learn to deal with the madness dynamic with understanding.

It is also in the human domain for people to learn to deal With the madness dynamic with acceptance, as the majority of persons labeled “mentally ill” are no more dangerous than anyone else in the broader society. Indeed, research strongly suggests that society’s most dangerous elements are persons who use alcohol and other drugs to excess and young males belonging to particular ethnic groups, or a combination thereof. Being tagged “mentally ill” by adherents of the dominant culture results in a kind of “social death” for the target, who is thereafter considered deficient in some human qualities, namely ability to make good judgments and decisions, to participate in sustained efforts, to contribute creatively to the mainstream social and political networking and to exhibit a comportment of “blending” with members of the dominant culture and its various institutions.

The consequence is general exclusion from the activities of the dominant culture which controls and manages the resources available for assisting the targeted persons to recover an interdependent way of being and lifestyle in society, putting them at dire risk for being exploited and devalued for commercial,social and political purposes unrelated to their personal preferences, hopes and dreams for inclusion in the national stream of life and policy decisions affecting their status in the broader culture.

A contributing factor to the exclusion and segregation practiced upon the targeted population by the mainstream culture is medicalization of emotions and behaviors. This medical model approach to persons experiencing problems in life or in blending with the mainstream ideologies involves an underlying assumption that such individuals have diseased brains and cannot be productive, rendering them valueless in a society that emphasizes functional and political identity over human interdependencies.

The sickness of the general society is typically not considered a possible causative factor in the generation of what is known as "mental illness" or madness. Instead, the target of the medical model dogma and reductionist philosophy is regarded in isolation from her surroundings, experiences and context of influences and judged in isolation to be defective (brain diseased), thus enhancing possibilities for her segregation from the mainstream and extreme limitations on her ability to find and pursue an ooperative life path as a contributing member of the whole society.

This devaluation of persons robs society of much needed diversity and creative enterprise while robbing the targeted population of opportunities to participate as whole, respected persons in the decisions and policies affecting their ultimate fates. It stymies, blocks, denies and prohibits self-determination and accountability by destroying chances for social interdependence.

When we say, "been there, 'got' what it's about," we do not suddenly become experts on the 'medical model'. But we do achieve an adaptive capability to relate to madness, to overcome the narrowness of personality of what Sue Poole calls 'normates', those adherents of the dominant culture who benefit by segregating targeted persons as brain diseased and incapacitated in judgment ("decisionally impaired".) The segregation of such persons on false premises merely ensures the exploitative elements of the dominant culture to perpetuate an assembly line of chronic, career mental patients who lose credibility, status, respect and their very identity as part of the whole human enterprise once labeled "mentally ill" and set apart for the (often undesired) attentions of institutional devalutation processes.

The human race has to learn a way of being that values labor, that is multicultural, that is conscious of gender role, that is attentive to sexual preference, to physical disability and to emotional distresses as temporary states possibly grounded in spiritual crisis often catalyzed by values confusions and search for meaning. The search for meaning can precipitate emotional breakdown in the midst of a larger culture whose institutions and cultivate material exigencies over human diversity, status over healing processes and phony ideologies over the pragmatics of helping those with identities spoiled and managed by a self-serving compulsion to control which appears to be resident in the dominant culture.

It also needs to become attentive to dealing with madness from the a 'respect' frame, what we mean here by facing the logic, reality and fundamental inequity of the 'social death sentence'. I've been working on this problem consciously for nearly 40 years. I rejected the 'back ward' agenda that life offered me and started to construct the way that I might have a 'real life': I'm still at it. But I keep finding that there is a dominant tendency in the provider system, one that is reflected sometimes in our own 'activist' movement, to define things in terms of "personality," as they call it. That means my character and reliability of perception are under challenge, instead of my creative solution to 'personality theory' being valued.

Devaluation of targeted persons and limitations placed on their economic and physical mobility under cover of “medical contingency” or labels implying human deficiency are the crux of the struggle in which we engage.

Yet it's still true, despite conventional psychology and even despite the work of David Lukoff who brought 'spiritual emergency' to DSM-IV, that the "Joan of Arc" way of organizing one's being is OK. It is part of what it means for me to be 'human', and .. I think .. for many/most/all of the folks on this list. I believe that madness can cause terrible suffering, but I also believe that if we act /in every way with respect for the phenomenology/ that dealing with madness will become part of what is "normal" in the personalities of people. That can occur when persons deemed "mentally ill" are also perceived as people rather than alien Others whose responses and activities are outside the boundaries of what the dominant culture currently arbitrates as essential human qualities.

Until spiritual and emotional crisis are recognized in the mainstream as ordinary responses to extraordinary difficulties encountered within the broader social context, the devaluation and medicalization of feelings and visionary creativities will continue to stymie our efforts to obtain acceptance and operative life paths, which require access to resources now controlled and managed by the dominant culture. Bridging the “us/them” divide is necessary if mental patients are to obtain respect for their beings and persons and inclusion in making the political and social decisions most affecting public attitudes toward them and policies determining their status in the whole domain of social interactions.