Everything in Its Place

by Oliver Sacks

  There were gigantic kitchens and laundries, and these, like the gardens and livestock, provided work and “work therapy” for many of the patients, along with opportunities for learning some of the skills of daily life, which, with their withdrawal into mental illness, they might never have otherwise acquired. And there were great communal dining rooms, which, at their best, fostered a sense of community and companionship.

  Thus, even in the 1950s, when conditions in state hospitals were so dismal, some of the good aspects of an asylum life were still to be found in them. There were often, even in the worst hospitals, pockets of human decency, of real life and kindness.

  The 1950s brought the advent of specific antipsychotic drugs, drugs that seemed to promise at least some alleviation or suppression of psychotic symptoms, if not a “cure” for them. The availability of these drugs strengthened the idea that hospitalization need not be custodial or lifelong. If a short stay in the hospital could “break” a psychosis and be followed by patients returning to their own communities, where they could be maintained on medication and monitored in outpatient clinics, then, it was felt, the prognosis, the whole natural history of mental illness, might be transformed, and the vast and hopeless population of asylums drastically reduced.

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  DURING THE 1960S, a number of new state hospitals dedicated to short-term admissions were built on this premise. Among these was Bronx State Hospital (now Bronx Psychiatric Center). Bronx State had a gifted and visionary director and a handpicked staff when it opened in 1963, but for all its forward-looking orientation, it had to deal with an enormous influx of patients from the older hospitals, which were now starting to be closed down. I began work as a neurologist there in 1966, and over the years, I was to see hundreds of such patients, many of whom had spent most of their adult lives in hospitals.

  There were, at Bronx State as at all such hospitals, great variations in the quality of patient care: there were good, sometimes exemplary, wards, with decent, thoughtful physicians and attendants, and bad, even hideous ones, marked by negligence and cruelty. I saw both of these in my twenty-five years at Bronx State. But I also have memories of how some patients, no longer violently psychotic or on locked wards, might wander tranquilly around the grounds, or play baseball, or go to concerts or films. Like the patients at Creedmoor, they could produce shows of their own, and at any time, patients could be found reading quietly in the hospital library or looking at newspapers or magazines in the dayrooms.

  Sadly and ironically, soon after I arrived in the 1960s, work opportunities for patients virtually disappeared, under the guise of protecting their rights. It was considered that having patients work in the kitchen or laundry or garden, or in sheltered workshops, constituted “exploitation.” This outlawing of work—based on legalistic notions of patients’ rights and not on their real needs—deprived many patients of an important form of therapy, something that could give them incentives and identities of an economic and social sort. Work could “normalize” and create community, could take patients out of their solipsistic inner worlds, and the effects of stopping it were demoralizing in the extreme. For many patients who had previously enjoyed work and activity, there was now little left but sitting, zombielike, in front of the now-never-turned-off TV.

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  THE MOVEMENT FOR DEINSTITUTIONALIZATION, starting as a trickle in the 1960s, became a flood by the 1980s, even though it was clear by then that it was creating as many problems as it solved. The enormous homeless population, the “sidewalk psychotics” in every major city, were stark evidence that no city had an adequate network of psychiatric clinics and halfway houses, or the infrastructure to deal with the hundreds of thousands of patients who had been turned away from the remaining state hospitals.

  The antipsychotic medications that had ushered in this wave of deinstitutionalization often turned out to be much less miraculous than originally hoped. They might lessen the “positive” symptoms of mental illness—the hallucinations and delusions of schizophrenia. But they did little for the “negative” symptoms—the apathy and passivity, the lack of motivation and ability to relate to others—which were often more disabling than the positive symptoms. Indeed (at least in the manner they were originally used), the antipsychotic drugs tended to lower energy and vitality and produce an apathy of their own. Sometimes there were intolerable side effects, movement disorders like parkinsonism or tardive dyskinesia, which could persist for years after the medication had been stopped. And sometimes patients were unwilling to give up their psychoses, psychoses that gave meaning to their worlds and situated them at the center of these worlds. So it was common for patients to stop taking the antipsychotic medicine they had been prescribed.

  Thus many patients who were given antipsychotic drugs and discharged had to be readmitted weeks or months later. I saw scores of such patients, many of whom said to me, in effect, “Bronx State is no picnic, but it is infinitely better than starving, freezing on the streets, or being knifed on the Bowery.” The hospital, if nothing else, offered protection and safety—offered, in a word, asylum.

  By 1990 it was very clear that the system had overreacted, that the wholesale closings of state hospitals had proceeded far too rapidly, without any adequate alternatives in place. It was not wholesale closure that the state hospitals needed but fixing: dealing with the overcrowding, the understaffing, the negligences and brutalities. For the chemical approach, while necessary, was not enough. We forgot the benign aspects of asylums, or perhaps we felt we could no longer afford to pay for them: the spaciousness and sense of community, the place for work and play, and for the gradual learning of social and vocational skills—a safe haven that state hospitals were well equipped to provide.

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  ONE MUST NOT BE too romantic about madness, or the madhouses in which the insane were confined. There is, under the manias and grandiosities and fantasies and hallucinations, an immeasurably deep sadness about mental illness, a sadness that is reflected in the often grandiose but melancholy architecture of the old state hospitals. As the photographs in Christopher Payne’s book Asylum attest, their ruins, desolate today in a different way, offer a mute and heartbreaking testimony both to the pain of those with severe mental illness and to the once-heroic structures that were built to try to assuage that pain.

  Payne is a visual poet as well as an architect by training, and he spent years finding and photographing these buildings—often the pride of their local communities and a powerful symbol of humane caring for those less fortunate. His photographs are beautiful images in their own right, and they also pay tribute to a sort of public architecture that no longer exists. They focus on the monumental and the mundane, the grand façades and the peeling paint.

  Payne’s photographs are powerfully elegiac, perhaps especially so for someone who has worked and lived in such places and seen them full of people, full of life. The desolate spaces evoke the lives that once filled them, so that, in our imaginations, the empty dining rooms are once more thronged with people, and the spacious dayrooms with their high windows again contain, as they once did, patients quietly reading or sleeping on sofas or (as was perfectly permissible) just staring into space. They evoke for me not only the tumultuous life of such places but the protected and special atmosphere they offered when, as Anna Agnew noted in her diary, they were places where one could be both mad and safe, places where one’s madness could be assured of finding, if not a cure, at least recognition and respect, and a vital sense of companionship and community.

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  WHAT IS THE SITUATION NOW? The state hospitals that still exist are almost empty and contain only a tiny fraction of the numbers they once had. The remaining inmates consist for the most part of chronically ill patients who do not respond to medication or incorrigibly violent patients who cannot be safely
allowed outside. The vast majority of mentally ill people therefore live outside mental hospitals. Some live alone or with their families and visit outpatient clinics, and some stay in “halfway houses,” residences that provide a room, one or more meals, and the medications that have been prescribed.

  Such residences vary greatly in quality—but even in the best of them (as brought out by Tim Parks in his review of Jay Neugeboren’s book about his schizophrenic brother, Imagining Robert, and by Neugeboren himself, in his recent review of The Center Cannot Hold, Elyn Saks’s autobiographical account of her own schizophrenia), patients may feel isolated and, worst of all, scarcely able to get the psychiatric advice and counseling they may need.*1 The last few decades have seen a new generation of antipsychotic drugs, with better therapeutic effects and fewer side effects, but the too-exclusive emphasis on chemical models of schizophrenia, and on purely pharmacological approaches to treatment, may leave the central human and social experience of being mentally ill untouched.

  Particularly important in New York City—especially since deinstitutionalization—is Fountain House. Established in 1948, it provides a “clubhouse” on West Forty-Seventh Street for mentally ill people from all over the city. Here they can come and go freely, meet others, eat communally, and, most importantly, use resources and networks for finding jobs or apartments, furthering their education, navigating the health care system, and so on. Similar clubhouses have now been established in many cities. There are dedicated staff members and volunteers at these clubhouses, but they are crucially dependent on private funds, since public funding is very inadequate.

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  ANOTHER MODEL EXISTS, in the little Flemish town of Geel, not far from Antwerp. Geel is a unique social experiment—if one can use the word “experiment” for something that has gone on for seven centuries and arose in so natural and spontaneous a fashion. In the seventh century, legend has it, Dymphna, the daughter of an Irish king, fled to Geel to avoid the incestuous embrace of her father, and he, in a murderous rage, had her beheaded. She was worshipped in Geel as the patron saint of the mad, and her shrine soon attracted mentally ill people from all over Europe. By the thirteenth century, the families in this little Flemish town had opened their homes and hearts to the mentally ill—and they have been doing so ever since. For centuries, it was the norm for a family in Geel to take in or adopt a boarder; during more agricultural times, these “guests” would be a welcome source of labor.

  The tradition is waning today, even though such families now receive a modest government subsidy. But when a family—often a couple with young children—indicates its readiness to take in a guest, they make no inquiry about their guest’s psychiatric condition or diagnosis. The guests are brought into the home as individuals, and when the relationship works well, as it does most of the time, the guests become cherished family members, like a beloved aunt or uncle. They may play a part in bringing up the children and grandchildren or in taking care of the elders.

  The anthropologist Eugeen Roosens has studied Geel in depth for over thirty years; he first published his observations in 1979 (Mental Patients in Town Life: Geel—Europe’s First Therapeutic Community). As he and his colleague Lieve Van de Walle write, the Geel solution is “not simply a happy but isolated remnant of the Middle Ages.” The system there has undergone at least two fundamental transformations that have allowed it to remain viable. The first occurred when the Belgian government introduced medical supervision in the community and, in 1861, built a hospital. Here, if things got too difficult for the family to handle, a boarder could go for medical treatment. Thus fortified by a hospital and its professional staff—psychiatrists, nurses, social workers, and therapists—providing both help for the family and (if need be) medical care, Geel continued to flourish, at one time before World War II hosting several thousand mentally ill boarders.

  A second change, over the last fifty years, has occurred as the impact of health professionals in Geel has markedly increased. During the day, more than half of the patients are able to take part in jobs or day programs, away from home, supervised by therapists and social workers. (Intentionally or not, this rise in day-care situations has coincided with a decline in home-based work, as more and more of the host families have moved into nonagricultural jobs.)

  Thus, Geel has evolved into a two-layered system, but a number of key elements of the traditional system have remained intact. Chief among them, as Roosens and Van de Walle write, are “maximal kin-like inclusion and integration of the patient, the kindness of the broader social context in Geel, the acceptance of the patients’ inherent limitations, the strong bond between boarders and foster families, the resilient mutual loyalty, and the entrenched responsibility of the next generation towards the boarders.”*2

  When I visited the town a few years ago, I saw guests strolling or bicycling in the streets, chatting, working in shops. I would not have guessed that they were boarders (save for clues from occasional odd mannerisms or behaviors), except that my hosts, from the hospital, knew all of them individually and were able to identify them for me. In the world at large, the mentally ill are often isolated, stigmatized, shunned, feared, seen as less than fully human. But here, in this little town, they were respected as fellow beings, treated with affection and care—at least as much as anyone else.

  When I asked several foster families why they had welcomed such a guest, they seemed confused. Why would they not? Their parents and grandparents had all done the same; here it is a way of life. The people of Geel may know that their neighbor, say, is a guest, with mental problems of one sort or another—but such a fact lends, seemingly, no stigma. It is simply a fact of life, unremarkable, just as being male or female would be.

  “For the residents of Geel,” Roosens and Van de Walle write,

  the line between “patients” and ordinary people is, in many ways, nonexistent. The prejudices against mental illness that are very much alive in the world at large are not found in the people of Geel, because they have been raised, for many generations, in the presence of mental “patients.” What makes Geel remarkable is not the blurring of the boundary between normal and abnormal, but the recognition of each patient’s human dignity, to the extent that, for them, family and community life is given an honest chance every single day.

  At the beginning of the nineteenth century, when Philippe Pinel, a founder of psychiatry in France, appealed to the new revolutionary government to strike off the chains that had (often literally) been used for centuries to shackle mad people, and a humane breath swept over Europe, this question was epitomized by Geel. Could a place like Geel provide a real alternative?

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  WHILE GEEL IS UNIQUE, there are other residential communities that derive, historically, both from the asylums and the therapeutic farm communities of the nineteenth century, and these provide, for the fortunate few who can go to them, comprehensive programs for the mentally ill. I have visited some of these—including Gould Farm in the Berkshires and CooperRiis near Asheville, North Carolina—and have seen in them much of what was admirable in the life of the old state hospitals. In places like these, Goffman’s gulf between staff and inmates is almost erased. There are friendships, and there is work for everyone to do. The cows have to be milked, the corn harvested. At the communal dinners at Gould Farm, I often found it impossible to know who was staff and who was a resident. Residents regularly move on to becoming staff. Community, companionship, opportunities for work and creativity, and respect for the individuality of everyone there—these things are coupled with psychotherapy and whatever medication is needed.

  Often the medication is rather modest in these ideal circumstances. Many of the patients in such places (though schizophrenia and manic depression remain lifelong conditions) may graduate after several months or perhaps a year or two, moving into more independent living, and perhaps going back to work or
school, with a more modest degree of ongoing support and counseling. For many of them, a full and satisfying life with fewer or even no relapses is within reach.

  Although the cost of such residential facilities is considerable—more than a hundred thousand dollars a year (some of which is funded by family contributions, the rest by private donors)—this is far less than the cost of a year in a hospital, to say nothing of the human costs involved. But there are only a handful of comparable facilities in the United States—they can accommodate no more than a few hundred patients.

  The remainder—the 99 percent of the mentally ill who have insufficient resources of their own—must face inadequate treatment and lives that cannot reach their potential. The millions of mentally ill remain the least supported, the most disenfranchised, and the most excluded people in our society today. And yet it is clear—from the experiences of places like CooperRiis and Gould Farm, and of individuals like Elyn Saks—that schizophrenia and other mental illnesses are not necessarily relentlessly deteriorating (although they can be); and that, in ideal circumstances, and when resources are available, even the most deeply ill people—those who have been relegated to a “hopeless” prognosis—may be enabled to live satisfying and productive lives.

  *1 . Elyn Saks, who has lived with schizophrenia since childhood, is a MacArthur Foundation fellow and a professor at the USC Gould Law School, where she specializes in mental health and the law.

  *2 . Roosens and Van de Walle are themselves members of this community, part of the fabric of life in Geel. They are thus able to provide nineteen detailed portraits of families and their boarders, some of whom Roosens has observed over a span of decades. These families and their guests present a wide range of situations, from happy ones in which the hosts and guests love and care for each other deeply, to homes in which the guests are “difficult” (Geelians speak of “good” boarders or, more rarely, “difficult” ones but never of “bad” or “crazy” boarders)—so difficult that the fostering situation has broken down. Even where very severe psychiatric problems exist, Roosens points out, when “a mutual warm relationship evolves [as it usually does], foster parents are prepared to go to great lengths to accommodate their guests.”