The Noonday Demon (72 page)

The guiding principle of Pennsylvania’s current system is that people should not be immersed in hospitals where madness is the given rule, but should rather live in the larger community, exposed constantly to the salutary effects of sanity. Pennsylvania patients with serious illness stay in long-term structured residential services. These are small places, with perhaps fifteen beds each, which offer intensive support, rigorous care, and an ongoing emphasis on integration. They support intensive case management, which allows a psychiatric social worker to establish a one-on-one relationship with a patient. “It’s someone who sort of follows you around and finds out what’s going on and butts in a little bit,” Rogers says. “It needs to be an aggressive program. One person I worked with early in my career threatened to get a restraining order against me. I wouldn’t take no for an answer; I’d push my way in, and if I’d had to, I would have kicked his door down.” These places also offer programs of psychosocial rehabilitation, which aim to help people with the pragmatics of “normal” life. About 80 percent of patients hospitalized for depression in Pennsylvania appear to do better under these circumstances. Full-scale intervention—up to and including forced shelter and treatment—is undertaken when someone is a danger to others or a danger to himself, as when he is outside in extreme cold. The only people who are consistently resistant to treatment of this kind are mentally ill abusers of drugs, especially heroin; such patients must detox before the state mental health system will offer them care.

Rogers also has created a chain of what he calls “drop-in centers,” street-level storefronts, usually staffed by people themselves recovering from mental illnesses. This creates employment for the people who are just beginning to cope with a structured environment, and it gives people who are in bad shape a place to go, hang out, and receive structured
advice. Once they are introduced to such places, homeless people terrified of more active intervention will return to them again and again. Drop-in centers provide a transition zone between mental isolation and companionship. Pennsylvania has now established a massive tracking system that smacks of the police state, but it does prevent people from falling off the edge and disappearing. A database includes all treatment through state systems, including every emergency-room visit every patient has ever made. “I typed my name in,” says Rogers, “and I was shocked by what came out.” If a patient in the Pennsylvania system goes AWOL, social workers will seek him out and continue to check on him regularly. It’s impossible to escape such attention except by recovering.

The problem with this whole program is its fragility. At the most pragmatic level, it’s fiscally unstable: big mental hospitals are elephantine things with established costs, while noninstitutional programs can easily be pared down during times of budgetary crisis. Then the insertion of mentally ill people into a community requires tolerance, even in open-minded, prosperous areas. “Everybody’s a liberal for deinstitutionalization until they get the first homeless person on their front porch,” says Representative Bob Wise. The greatest problem is that for some mentally ill people, all this independence and immersion in the community is too much. Some cannot function outside a totally insular environment such as a hospital. Such people are regularly expelled into a world whose functioning overwhelms them, and this is not helpful to them or to those who encounter and help to care for them.

None of this is discouraging to Rogers. He has forced the closing of hospitals by using the carrot-and-stick approach, ingratiating himself with highly placed government officials and also suing them in class action suits that cite the Americans with Disabilities Act. Rogers has modeled his efforts on Cesar Chavez’s United Farm Workers movement; he has, in effect, attempted to unionize the mentally ill, giving that extremely diffuse body of disenfranchised people a collective voice. In the 1950s, during the heyday of institutionalization, about fifteen thousand patients were warehoused in facilities around Philadelphia. Rogers has closed down two of these, and Norristown, the last one standing, numbers its patients in the hundreds. The primary opposition to Rogers’s class action lawsuits has come from the unionized workers (mostly in maintenance) at the hospitals. The closing of the hospitals has been achieved by moving people out as they achieve sufficient health to enter long-term community-care facilities. “We close them down gradually and through attrition,” Rogers says.

If major hospitals have been sites of abuse, the chances are that community-based programs will become sites of comparable or worse
abuse. The checks and balances within these programs are hard to maintain. Large numbers of officials and mental health workers rule over tiny principalities of care, each with its own internal workings. How can the operations of such centers be fully visible to those who in principle oversee them, people who usually come through only for occasional, quick visits? Is it possible to sustain high standards of vigilance when authority has undergone devolution?

The question of what constitutes mental illness and who should be treated rides very much on the back of public perceptions about sanity. There is such a thing as sanity and there is such a thing as madness, and the difference is both categorical and dimensional, of kind and of degree. Ultimately there is a politics of what one asks of one’s own brain and of the brains of others. There is nothing wrong with this politics. It is an essential part of our self-definition, a cornerstone of the social order. It is wrong to spot collusion behind it; unless one believes that consensus on complex subjects can emerge uncorrupted, one must work with that curious mix of personal opinion and public history that determines all our ways as social animals. The problem is not so much the politics of depression as our failure to recognize that there
is
a politics of depression. There is no freedom from this politics. For those without money there is less freedom than for those who have the prerogatives of financial wherewithal; the politics of depression echoes the rest of life. For those whose disease is mild there is more freedom than for those who are vastly ill; and this is probably as it should be. In the late 1970s, Thomas Szasz, most famous for his defense of the right to suicide, put forward arguments against the use of medications, claiming that there was no natural law according to which the psychiatrist was entitled to intervene in the personal life of the patient with prescriptions. It’s interesting to learn that one has a right to be depressed. It’s just as well to know that under the right rational circumstances one can decide not to take medication. Szasz, however, exceeded his mandate and enabled the belief among his patients that they were being powerfully self-realizing in giving up their medications. Is it a political act to do this? Some of Szasz’s patients believed that it was. Our definitions of “responsible behavior” from psychiatrists are also political. As a society, we take exception to Szasz’s viewpoint, and he had to pay $650,000 to the widow of one of his patients after that patient killed himself in a particularly brutal and distressing way.

Is it more important to protect someone from his death or to allow him the civil liberty to avoid treatment? The problem has been much debated. A particularly disturbing recent op-ed article in the
New York
Times,
written by a psychiatrist at a conservative think tank in Washington in response to the new Surgeon General’s Report on Mental Health, proposed that helping the mildly ill would deprive the seriously ill, as though mental health care were a finite mineral resource. She stated categorically that it was not possible to get unsupervised people to take their medications and proposed that those mentally ill (“with debilitating illnesses like schizophrenia and bipolar disorder”) who end up in prison probably need to be there. At the same time, she proposed that the 20 percent of the U.S. citizenry who carry the burden of some kind of mental illness (including, apparently, all those who have major depression) in many instances do not need therapy and therefore should not get it. The key word here is
need
—because the question of need turns on quality of life rather than on existence of life. It is true that many people can stay alive with crippling depression, but they can also stay alive, for example, with no teeth. That one could manage okay on yogurt and bananas for the rest of one’s life is not a reason to leave modern people toothless. A person can also live with a clubfoot, but these days it’s not unusual to take measures to reconstruct one. The argument in effect comes down to the same one that is heard over and over again from outside the world of mental illness, which is that the only people who
must
be treated are those who pose an immediate expense or threat to others.

Doctors, especially those who are not attached to teaching hospitals, often learn about advances in medicine from pharmaceutical salesmen. This is a mixed blessing. It ensures that doctors do get continuing education, and that they learn about the merits of new products as those products become available. It is not an adequate form of continuing education. The industry focuses on drugs over other therapies. “This has helped to prejudice us toward medications,” says Elliot Valenstein, professor emeritus of psychology and neuroscience at the University of Michigan. “The medications are excellent and we are grateful to the companies for making them, but it’s a shame that the educational process isn’t balanced better.” Further, because industry funds many of the largest and most comprehensive studies, there are better studies of patentable substances than there are of nonpatentable ones such as Saint-John’s-wort; there are more studies of new drug therapies than of other new treatments such as EMDR (eye movement desensitization and reprocessing). We have no national programs sufficient to balance against the work sponsored by the pharmaceutical companies. In a recent article in
The Lancet,
a leading medical journal, Professor Jonathan Rees proposed a complete reconception of the patent process to put a profit motive into therapies that are currently nonpatentable, including what he calls
“genomics and informatics.” For the time being, however, little financial incentive exists in this area.

Members of the pharmaceutical industry know that in the free marketplace the best cures are likely to be the most successful. Their pursuit of good treatments is of course entwined with their pursuit of lucre; but I believe, contrary to some grandstanding politicians, that pharmaceutical executives are less wantonly exploitative of their society than are people in most other industries. Many of the discoveries that distinguish modern medicine have been possible only because of the huge research and development programs of the pharmaceutical trade, which spends about seven times as much on developing new products as do other industries. These programs are predicated on profit; but it is perhaps nobler to make a profit by inventing cures for the ill than by inventing powerful armaments or producing pandering magazines. “It had to be in industry,” said David Chow, one of the three scientists at Eli Lilly who invented Prozac. William Potter, also now at Lilly after departing from the NIMH, said, “It was the lab scientists here who drove the development of Prozac. The important research is funded by industry. Society has made that choice and given us this system of great progress.” I tremble to think where I would be if industry had not developed the medications that have saved my life.

For all the good that the industry has done, however, it
is
an industry, afflicted with all the bizarre trappings of modern capitalism. I have attended any number of educational sessions staged by companies torn between research and material seduction. At one of these, held at the Baltimore Aquarium, a choice was offered between a lecture on “Neurobiology and Treatment of Bipolar Disorder” and a “Stingray Feeding and Presentation for Special Guests and Their Families.” I eventually attended the U.S. launch of one of the major antidepressants, a product that was quickly to capture a significant market share. Though the launch operated under the constraints of a tight regulatory body—the Food and Drug Administration (FDA)—which governed what could be said about the product, it was something of a circus at which emotions were tuned with a deliberateness that no flying Wallendas could ever achieve. It was, further, an incongruously wild fiesta, replete with disco parties, barbecues, and hatching romances. It was the epitome of corporate America high on its commodities. This is how salesmen for any product are motivated to sell in the intensely competitive promotional U.S. marketplace, and the glitz was, I think, harmless; but it was somewhat anomalous for the promotion of a product for people suffering from a terrible affliction.

For the keynote addresses, the salespeople assembled in a hulking conference center. The size of the audience—more than two thousand
people—was overwhelming. When we all were seated, there rose out of the stage, like the cats in
Cats,
an entire orchestra, playing “Forget Your Troubles, C’mon Get Happy” and then Tears for Fears’s “Everybody Wants to Rule the World.” Against this backdrop, a Wizard of Oz voice welcomed us to the launch of a fantastic new product. Gigantic photos of the Grand Canyon and a sylvan stream were projected onto twenty-foot screens, and the lights went up to reveal a set built to resemble a construction site. The orchestra began playing selections from Pink Floyd’s
The Wall.
A wall of gigantic bricks slowly rose at the back of the stage, and on it the names of competitive products appeared. While a chorus of kick dancers wearing mining helmets and carrying pickaxes performed athletic contortions on an electronically controlled scaffold, a rainbow of lasers in the form of the product logo shot from a stagecraft spaceship at the back of the room and knocked out the other antidepressants. The dancers kicked up their workboots and did an incongruous Irish jig as the bricks, apparently made of stage plaster, crashed down in thuds of dust. The head of the sales force stepped over the ruins to crow gleefully as numbers appeared on a screen; he enthused about future profits as though he had just won on
Family Feud.