“You need to treat these people as people, to respect their individuality, but to connect them up to the mainstream,” Representative Kaptur explains. The American Civil Liberties Union (ACLU) takes the moderate position. It has published a statement that “the freedom to be wandering the streets, psychotic, ill, deteriorating, and untreated, when there is a reasonable prospect of effective treatment, is not freedom; it is abandonment.” The problem is that the choice is too often between total commitment and total abandonment: the present system is predicated on categorical psychosis and grossly lacks the intermediary-care solutions most depressives require. We must check out the people who gibber on our streets, assess the fluctuations of their suicidality, determine their potential danger to others—and then attempt to predict who, after resisting a cure, will upon recovery be grateful that the cure was thrust upon him.
No one really wants to be depressed, but some people do not want to be made well as I would define well. What options should they have? Should we let them withdraw into their illness? Should we pay the social expense of such withdrawal? Through what due process should we determine these matters? The potential for bureaucracy is terrifying, and the delicate negotiation of who needs what will never be well resolved. If one accepts that perfect balance will be impossible, one must assume that we have two options: to imprison some people who should be free, or to free some people who will destroy themselves. The question, really, is not so much whether treatment should be foisted on people as when it should be foisted on them and by whom. I cannot look at this problem and turn away from Sheila Hernandez, the poor HIV-positive woman who fought against her imprisonment at Hopkins, who wanted to be left free to die—and who is now delighted to be alive and has her cell phone ringing every minute. But I am reminded also of the Korean boy with cerebral palsy, a patient with acute multiple disorders, including physical disabilities that prevent him from committing suicide, who is forced into a life in which there will be no happiness and from which he is not permitted to escape. Despite much pondering and consideration, I cannot find the right answer to this question.
The problem of aggression has spawned defensive laws; though few depressives are violent, they are in the purview of schizophrenia’s legalities. The mentally ill are a diverse body, and the monolithic approach to mental illness laws causes intense suffering. Since the landmark 1972 action against Willowbrook, an institution for the mentally retarded that was, among other things, doing experiments on uninformed patients, the policy of providing the “least restrictive placement” possible has held sway. While the mentally ill may be deprived of rights because of their aggressive behaviors, they also lose out on rights because the state assumes parens patriae power, taking a protective position, much as it does toward minors. The ACLU does not believe that parens patriae should be extended, and certainly the idea of parens patriae was abused in places such as the Soviet Union; it is a phrase too much associated with paternalistic police power. But how much suffering should be supported in defense of such a legal principle?
The Treatment Advocacy Center (TAC), based in Washington, D.C., is the most conservative body on treatment, and its position is that people should be incarcerated even if they do not pose a clear and present danger. Jonathan Stanley, the assistant director of the center, complains that it is only the criminal element that is receiving treatment. “People will pay a whole lot more attention to a one-in-two-million chance that they’ll be pushed under a subway than they will to a one hundred percent chance that they’ll run into twenty psychotics on a given day in Central Park.” For Stanley, deinstitutionalization was the unfortunate result of civil libertarians’ defending the “wrong” people while the government went wild about cutting costs. Deinstitutionalization was supposed to translate into a diverse range of care in the community, but nothing of the sort has occurred. The consequence of deinstitutionalization has been the disappearance of a multitiered system of treatment in which people are gently shoehorned back into their communities: far too often, patients are in for total incarceration or they’re out on their own. The idea of providing a full social-work force to ease people from despair to high levels of functioning has not yet caught on in government circles. The TAC has strongly backed legislation such as Kendra’s Law, a New York act that allows suits to be brought against mentally ill people who fail to take their medications, criminalizing the ill. Depressed people are taken to court, fined, and then are released again into the streets to fend for themselves, since there is no room or budget for providing more extensive treatment. If they cause too much trouble, they are incarcerated as criminals: the result of deinstitutionalization has in many instances been to shift people from hospitals to prisons. And in the prisons, where they receive inadequate and inappropriate treatment, they cause a terrific amount of trouble. “No one else,” Stanley maintains, “wants a good mental health system so much as a jailer does.”
The Bazelon Center in Washington, D.C., at the liberal end of the spectrum, believes that commitment should always be voluntary and defines mental illness as interpretive. “Supposed lack of insight on the part of the individual,” they have said, “is often no more than disagreement with the treating professional.” Sometimes it is; but not always.
The Veterans Administration, still persuaded that psychiatric complaints are unbecoming to strong military men, spends less than 12 percent of its research budget on psychiatry. In fact, psychiatric disturbances may be the most frequently occurring problem for veterans, who have a high rate of post–traumatic stress disorder, homelessness, and substance abuse. Given that a large part of the taxpayers’ money has already been spent training these men and women, the relative negligence of them is particularly troubling and reveals further the political naïveté of mental health policy. Depressed veterans, particularly those who fought in the Vietnam War, make up a large part of the American homeless population. These people have undergone two traumas in a row. The first is war itself, the horror of killing people, of seeing the desolation all around, and of sustaining oneself in a situation of great danger. The other is enforced intimacy and group dynamics; many veterans become almost addicted to army standards of structure and get lost when they are thrown back on their own resources and have to shape their own activities. The Veterans Committee has estimated that about 25 percent of veterans who arrive at hospitals have a primary diagnosis of mental illness. Given that more than half the doctors in the United States have received some form of training in veterans’ hospitals, prejudice in such institutions spreads its contagion into civilian hospitals and emergency rooms.
Representative Kaptur tells the story of going to a Veterans Administration hospital near Chicago. She was in the emergency room when the police brought in a man in bad shape, and the social worker who was on duty said, “Oh, it’s one of my regulars.” Kaptur asked her what she meant, and she explained that this was this man’s seventeenth admission for mental health problems. “We get him in here; clean him up; get him on his medication; let him go; and within a few months he comes back here.” What can be said of a mental health system in which such things happen? “Seventeen admissions for emergency care,” says Kaptur. “Do you know how much money we’d have to help other people if we avoided seventeen admissions by providing adequate community care? The cost of improper treatment is so much higher than the cost of good treatment.”
We seem to be moving back toward involuntary commitment, to have come full circle. We have gone from a monolithic and malign mental health system for the depressed to a shattered, limited one. “Things are better than the old system, which left these people locked in a room to rot,” says Beth Haroules of the New York Civil Liberties Union, “but given how much we now know about the origins and treatment of mental illness, the public system is even farther behind than it was twenty years ago.” The reality is that some people are not capable of making their own decisions and do require involuntary commitment; others, though ill, do not require such commitment. It
would be best to provide a graduated system of care that can offer extensive services at various levels and that incorporates aggressive outreach for outpatients who are likely to diverge from their treatment regimens. It is necessary to set up guidelines for due process and put all those who require commitment through the same examinations, into which we must incorporate checks and balances. That due process must take account of both the threat that an ill person may pose to society and the pain that an ill person experiences unnecessarily. Standards must be established by which people will be put into prison, into involuntary psychiatric commitment, into involuntary psychiatric treatment, or into voluntary psychiatric treatment. Space must be made for those people who, with full information and at no significant cost to others, wish to eschew treatment. An efficient and disinterested system must be established to oversee these matters.
Lynn Rivers is the only member of the U.S. Congress who has come out of the closet about her own struggles with mental illness. Married while she was pregnant at eighteen, she worked at first in food preparation and as a Tupperware lady to support her family. She began to develop symptoms shortly after the birth of her first daughter. When her illness escalated, she went to see a doctor. Her husband, an autoworker, had a joint Blue Cross/Blue Shield plan. “I believe it covered six visits to a psychiatrist,” she said to me sarcastically. For the next decade, half of her and her husband’s take-home pay went to psychiatric bills. By the time she was twenty-one, she was having difficulty working and was afraid to answer the telephone. “It was horrible. Long. The depressive episodes would go on for months. I spent months in bed. I’d sleep twenty-two hours a day. People here often think of depression as being sad: no matter what I tell other legislators, they don’t know. They don’t understand how it is emptiness, how it is a vast nothing.”
Faced with the costs of treatment, Rivers’s husband worked two full-time jobs and much of the time a third one part-time, holding his place in a car factory, working at the university, and delivering pizzas at night. He had a paper route for a while and he worked at a toy store. “I don’t know where he found the strength,” Rivers says. “We just did what we had to do. I can’t imagine what it would be like to go through a severe mental illness without familial support. It was so horrible anyway, and if the family, if anger—” Rivers paused. “I don’t know how anybody could survive. He took care of me too. We had two little kids. I could do a bit with them, but not much. We somehow rose above reality and made it work.” Rivers still carries guilt about the children, “though if I had broken my back in a car accident, I would not have been more disabled, and I would have felt justified in needing so much healing time. But as it was, every time my kids had trouble in school or ran into any problem, I would think, it’s because of me and it’s because I wasn’t there and I wasn’t this and I wasn’t that. Guilt was my constant companion, guilt about things I couldn’t control.”
She finally found “the perfect mix” of medications in the early nineties; she now takes lithium (her dose has gone as high as 2,200 mg per day, though it is now stable at 900), desipramine, and BuSpar. As soon as she was well enough to do it, she launched a career in public service. “I am a walking, talking advertisement for mental health research. I prove it. If you will invest in me, I will pay you back. And that’s true of most people suffering with this disorder: they just want a chance to be productive.” Rivers earned a college degree by studying part-time while caring for her family; graduated with distinction; and went on to complete law school. She was elected, when she was in her late twenties and having relatively controlled illness, to the Board of Education in Ann Arbor. Two years later, for unrelated reasons, she had a hysterectomy, and because she developed anemia, she missed six months of work. When she decided to run for Congress, “my opponent found out that I had had mental illness and tried to indicate that I’d missed that time at work because I’d had a nervous breakdown.” Rivers was doing a call-in radio interview, and a planted caller asked whether it was true that she had had a problem with depression. Rivers immediately acknowledged that she had and that it had taken her ten years to stabilize. After the interview she went to a meeting of a local Democratic board. When she walked in, a local party bigwig said, “Lynn, I heard you on the radio. What were you doing, are you nuts?” And she said calmly, “Of course, that’s what the radio show was about.” Her serene, composed approach to the issue made it a nonissue. She won the election.
Several other members of the House have told Rivers of their depressive illness but are afraid to tell their voters. “One colleague said that he wanted to tell people but that he felt he couldn’t. I don’t know his electorate. Perhaps he can’t. Most people who have depression don’t make these judgments very accurately because they’re mired in guilt. It’s a very lonely disease. But in the same way my gay friends say that being out of the closet relieves them of a great burden, I have been liberated: my depression is just not an issue anymore.” Representative Bob Wise calls mental illness “the family secret everyone has.”
“You have to self-refer,” Lynn Rivers says. “You have to find your community’s mental health services. Let the record show that I sneered when you mentioned ‘community mental health.’ Listen, if you’re waiting for an autoworker to go across the shop floor to find his union steward and say, ‘My son has schizophrenia, my wife has manic-depressive disease, my daughter is going through psychotic episodes’—it ain’t gonna happen.” This country,” she avers, “hasn’t moved forward enough for us to claim the kind of care we need. Furthermore, prescribing is frequently done by doctors who don’t know enough; and in an effort to save money, HMOs give them a formulary that limits the number of medications they can prescribe. “If your idiosyncratic response can’t be negotiated with that list of medications, that’s it for you!” Rivers says. “Even when the illness is stabilized, you have to replace the coping mechanisms that made sense in the context of the illness and that do not make sense in the context of health.” She is appalled by cuts in funding for ongoing psychodynamic support, which she believes will increase across-the-board social costs. “It’s a mess,” she said.
Joe Rogers, executive director of the Mental Health Association of Southeastern Pennsylvania, is a genial spread of a man, with easy manners, a curious air of disheveled authority, and a fluent, engaging way of speaking. He can be garrulous and philosophical, but he is also shrewd and pragmatic, with an eye that never for a moment shifts from its goal. When we first met, for lunch at a Philadelphia hotel, he was wearing a blue suit and a striped tie, and he had a briefcase that seemed to spill executive habit from its guts. While I looked over the menu, he said that he had lived in New York for a while. “Oh, where’d you live?” I asked. “Washington Square,” he said. He took a roll from the bread basket on the table. “I live around Washington Square myself,” I replied, closing my menu. “It’s a great neighborhood. Where were you?” He smiled a bit wanly and said, “Washington Square. In it. On a bench. For nine months. One stretch when I was homeless.”
Joe Rogers, like Lynn Rivers, has gone from the “consumer” end of the mental health network to the “supplier” end. One of four children, he grew up in Florida with an alcoholic mother and a gun-toting father who was usually absent and intermittently suicidal. Though his parents came from backgrounds of relative comfort, their dysfunction led them into real destitution. “We lived in a house that was falling apart and there were cockroaches running around everywhere,” Rogers recalls. “There were times when the grocery money would disappear, and later I found out that my father was pretty addicted to gambling, so we didn’t see even whatever salary he was earning. We weren’t starving, but in relation to where my parents had come from, we were really in poverty.” Rogers dropped out of school at age thirteen. His father would habitually take out a Luger and tell his son that he was ready to kill himself, and Rogers developed some finesse at dealing with the situation. “When I was twelve, I’d learned to take the gun away from him
and hide it.” In the meanwhile, his mother’s alcoholism got worse and worse, and she went through frequent hospitalizations; she too made suicide attempts, though Rogers describes them as rather halfhearted. Rogers’s father had died by the time Rogers was sixteen; his mother died when he was twenty.
“Looking back on it, I think my father would have responded to treatment,” Rogers says. “I don’t know about my mother.” Rogers himself was largely inactive from thirteen to eighteen, but at eighteen he began working toward a GED; he met a woman he liked and he began to try to build a life for himself. He went to a Quaker meeting where he met a psychologist who tried to give him some help. Eventually he hit a crisis and found himself one day in his car at a stop sign, unable to decide whether to go forward or backward or left or right. “I was just sitting there, with a total sense of loss.” Soon after that he became acutely suicidal. His Quaker friend helped him to get into a hospital, where he was diagnosed and put on lithium. It was 1971, and Rogers had no place to go. His girlfriend left; his parents were dead; he was living on social security.
Rogers went through repeated hospitalizations. Antidepressant therapy was primitive at that time, and Rogers lived on sedating psychotropics, “which made me feel dead.” He hated the hospital. “I started acting better because I wanted to get the heck out of there.” Rogers still cannot speak of state hospitals without a shiver of horror. “I spent six months in one and—just the smell. They spend a hundred twenty-five thousand dollars per patient per year, and they could at least have a decent physical plant. You’re sharing a room with two or three other people. You’re locked up with them in a small area. There isn’t much by way of staffing and the staff aren’t well trained, and they won’t listen to anything you say. They are often abusive. And very authoritarian, which sits badly with my rebellious streak. Those places are prisons. As long as the funding is in place, no one thinks about discharge—no one has the job of trying to get people out of the red tape they’ve been wrapped in. It destroys you as a person to be in one of those places for long.” In hospitals, he was put on strong sedation that made him “manageable” though it frequently failed to address his problems in any substantive way; sedated anxiety and irritability without antidepressant treatment is simply a withdrawal into a haze of misery. Rogers does not believe in forcing people into treatment on grounds that afterward they’ll be glad you did. “If you went into a bar and grabbed someone who was drinking too much and put him into a detox center and counseled his wife, he might be glad you did, but it would be kind of a violation of our social norms and his civil liberties,” he says.
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