History, Principles, and Definitions of Consumer-direction and Self-determination

Rae E. Unzicker

Prepared for the National Leadership Summit on Self-Determination\ and Consumer-Direction and Control; Bethesda, MD, October 21 - 23. 1999.

The fact that the topic of the paper as assigned uses the term "consumer-direction" sets a presumption. It is a presumption that, in my opinion, perpetuates a belief in the medical model.

When one calls oneself a "consumer," inherent in it is one's assent to the idea of mental illness. If one accepts this presumption, then there is no discussion of self-determination, because the medical model assures you aren't going to have any rights. The doctor will decide what your rights are because he's treating your illness. And he may treat it by tying you to down in five places and leaving you there for days. It will almost certainly be treated with the plethora of drugs, drugs that are now being advertised on television and in popular magazines, drugs for which the market has lately expanded even to our pets, who have "attachment disorders." There's one simple English word for most psychiatric treatment -- torture.

So, if you agree to your "illness" and, by logical extension, the "help" you are offered, there is no such thing as self-direction or self-determination. It is what I define as the Chinese menu system of "consumerism" -- you can have One From Column A, One from Column B -- but what if you don't like Chinese food? There is no exit. There is no possibility of going down the street to the nearest MacDonald's. There is only "mental illness," or, in the current lexicon, "severe and persistent mental illness," a code word for "hopeless."

The earliest days of what was then called the antipsychiatry movement recognized this, and did what all human rights activists did--protested, carried signs, sang songs on street corners. In short, they said no. A psychiatrist would say they were in denial.... but, sometimes, denial is not such a bad thing. It can be empowering in this situation in particular.

I saw the movement change in the early 1980's, when the government began to hand out small amounts of money, beginning with a conference called "Alternatives," in 1985. I was there when one person attempted to organize this group, with no support from the bottom up, and actually elected people to sit on a Board of Directors for an organization that existed for a stormy three or four years. It is my belief that the mental health bureaucrats were attempting to create a parallel group to the National Alliance for the Mentally Ill, to which they had also given seed money. These two groups -- family members and "consumers" would then act as advocates for the existing system, doing the lobbying that had never been done effectively by anyone other than the vested interests of psychiatric and drug company lobbies. It would look, on the surface, like the "real grassroots" was supporting the programs, research, and activities of the government's mental health agenda -- to medicalize and, by some fractured reasoning, then de-stigmatize "mental illness." (A parallel could be drawn to AIDS, which truly is a medical disease, but which has not been de-stigmatized, even with massive public information campaigns and glittering support by Hollywood.)

I saw with my own eyes the split in the movement. People who had, before this time, chained themselves to the gates of mental hospitals, were now talked about working cooperatively with the system, advocating for our "rights" within a system in which there are no rights. Rights, as we know them, are, in the mental health system, called privileges. And we earn those "privileges"-- walking outside, being unlocked from seclusion rooms, making phone calls, writing letters -- by compliance with medical-model treatment. We take our drugs. We cooperate. We assent.

This model of "consumerism" had led, in my opinion, to an almost complete co-optation of the original principles held so dearly by not only the mental patients liberation movement, but by every civil rights movement in the history of this country, beginning with the signers of the Declaration of Independence and Bill of Rights, right through to the civil rights, women's rights, and gay rights movements.

But, for a mental patient, again, those "rights" do not include the right to refuse treatment, and this is what makes "consumer-direction" and "self-determination" an oxymoron in this context. Until we have the absolute right to be crazy, to not be intruded on, to not be "helped," self--determination is a meaningless phrase. More than that, it's an insult.

Since that first conference, the movement has fractured into many splinter groups, until, I believe, there is no real "movement"in existence, merely pockets of people with varying degrees of resistence -- or non-resistence -- to force in the mental health system.

For example, one program which receives hundreds of thousands of dollars a year spends most of it duplicating mental health services, but provided by consumers. Now, who had the idea that consumer would be any better at providing services than anyone else? In fact, who are the models for these consumer case-workers? Mental health professionals, of course -- the very people they saw and experienced while they were incarcerated and treated. Nothing is more abhorrent to me than one consumer saying to another -- "You can get better, because I did." If one cancer patient said that to another, we would see the ludicrous underpinnings of that reasoning. It's condescension at its best, and re-traumatization at its worst, because it's being done to you by a fellow survivor. A fellow human being.

I have often said that I am glad I escaped the mental health system before the advent of Community Support Programs. When I visit these programs, I see an almost exact replica of what I saw in the mental hospitals in which I spent a good deal of time -- passive, compliant, lost souls. Often, it is a requirement to sign a "compliance contract" to participate in a CSP program, and it is a requirement to agree to participate in a CSP program that earns one's exit from a mental hospital. These contracts make participation contingent upon taking drugs, participating in work programs that nearly always involve food, filth, and filing, and obtaining housing. In other words, if you don't agree to comply with the rules of the program, you may not have a place to live. I have seen these supported employment programs, in which a "job coach," earning $8 an hour or more, is watching a "consumer"so his or her job -- generally cleaning -- and the "consumer" is earning $3. A friend of mine has a daughter who works at the local community support program. The major part of her job is delivering medications to people at their apartments and watching them take them.

This is choice? This is self-determination? No. This is moving the same oppressive attitudes and beliefs from the mental hospital to the community, and this is what supports internalized oppression -- passivity, dependence, weakness, irresponsibility. When I speak, I often ask how many people (these are generally "consumers" I'm speaking to) know of one person who has "graduated" from a day-treatment program, and gone on to live an independent life, free from the mental health system, in their own apartment or home, with their own self-generated job. The answer is often no one, rarely, someone has heard of one or two.

In all this acceptance of consumer roles we are authenticating state psychiatry, we are legitimizing it, we are reinforcing it, we are giving it respectability, it can bus us in here, set us up and we look like we are really buying it. "Consumer" is a very dangerous way to see oneself. It implies the kinds of freedoms we would never reach out and hope to enjoy in this life. I am not a consumer. I am a survivor. I am a protester. My entire relationship to state psychiatry, and most other kinds of psychiatry, including therapy, has been through advocacy, because true advocacy -- true self-determination -- supports my deep and profound opposition to these invasions of the self. My self.

And so the evolution of "consumerism" in this country -- and others -- has led not only to a large group of disenfranchised, disempowered people, but also to a group of oppportunistic "consumers" who have sold their prior beliefs down the river in order to partake of the cornucopia of federal funding for "consumer" activities. These consumer activities have the imprimatur of the federal and state agencies -- as long as they don't cross the line into opposition to psychiatry or the mental health system. Believe me, "survivors" don't get federal or state money. And most of them don't want it.

Several groups have lost their funding because they dared to cross the line; in one case, a group in Kentucky was told they'd lose their funding if they invited Dr. Peter Breggin to speak at a conference. In my own state, the same thing occurred, with a major intervention by AMI, which simply co-opted the fledgling "consumer" movement and took the money themselves. God forbid "consumers" be allowed to be exposed to views other than those perpetuated by their "caretakers." They might then get an idea of what true self-determination is, of what freedom is.

Yet, at nearly every public forum, the underlying cry remains heard: No forced treatment. This was repeated again and again at a recent national hearing by the National Council on Disability. It seems so obvious: there can be no self-determination when force exists. Every person who has experienced the mental health system first hand knows this at a deep, profound, internal level.

Involuntary treatment is the battleground -- not better services, more money for SSI, managed care, or any of the other important issues we discuss politely.

Because it is the fear of civil commitment that drives each of us. It still impacts my life in many ways. You take drugs you hate because you're threatened with being locked up if you don't, or because it's a requirement to be released from the hospital. You participate in day treatment.

You don't get upset -- and you certainly don't get your parents upset. You become in a thousand little ways more cautious, less expressive, blander, less alive -- so you don't stand out, so no one notices you.

And this is the beginning of the encroachment, when spiritual death begins. It is a day-to-day tyranny, a slow wearing down of the spirit.

No longer do you trust your own bright clear inner voice.

No longer do you know what's best for you. But someone else does.

No longer does if ever feel safe to go to a real doctor for a real medical problem.

No longer can you know if you're sad -- or if you're "depressed." Your feelings -- the very essence of you -- get re-labeled, and the doubt begins....

.....and it is doubt and fear and uncertainty that drive all political oppression.

Psychiatric oppression, and the use of forced treatment (and virtually all "treatment" is forced or coerced in one way or another) is the last great barrier to true self-determination. Until we deal with this issue straightforwardly, there can be no one "movement." We're still not even in agreement on what we call ourselves -- consumers, survivors, ex-patients, ex-inmates, and a plethora of other terms, each driven by one's own view of one's experience and self.

People who have experienced the psychiatric system first hand are as diverse and unique as any other group. Perhaps their only commonality is their experience. Some are grateful, and gladly participate in cradle-to-grave "community support programs."Some are angry and radical, and work tirelessly, without government funding, to fight psychiatric oppression. Most, I'd wager, put their experiences behind them, don't talk about them, and go on. It is this group that is the vast majority of "consumers," "survivors," "ex-patients" -- a silent majority who are either afraid to speak out, or who simply choose to ignore what happened to them.

Therefore, no one group, no one person, no one philosophy, can lay claim to ownership of A Consumer-Direction and Self-Determination." This belongs to the majority -- the people who have voted with their feet.

To the rest, from those who profess the empowerment/recovery model to those who are determined to become that force which wields political power at the highest level of government, remains the unanswered dilemma. For whom do you speak? Who do you represent? My answer: No one but themselves.

In The Dancing Healers, Carl Hammerschlag writes, "When it comes to understanding the mind, we are like children. Even if we someday know the brain and its chemistry, the mind will always have a mind of its own. The mind is a multifaceted jewel that snatches at whatever light comes in from many angles and creates a myriad of hues and colors. There are as many ways to see the light as there are ways to create it."

In Memory and Celebration of Rae Unzicker

Further reading:

The Ex-Patients' Movement: Where We've Been and Where We're Going, Judi Chamberlin, The Journal of Mind and Behavior, 11(3-4), 323–336 (1990)

Mental Health Advocacy: From Then to Now (Rae Unzicker, from the NARPA Rights Tenet Newsletter)