17

ROSEMARY KENNEDY

The uproar that followed the publication of “On Being Sane in Insane Places” left America with the urgent question: What to do about it? David Rosenhan, Bill Underwood, and the others had provided Science-sanctioned evidence for what the anti-psychiatry movement and their ilk had long been arguing: that mental hospitals were relics from a primitive era and should be shuttered. “The anti-psychiatrists could now claim their case was proved. A scientific study in the premier journal of the scientific community had shown psychiatrists did not know the sane from the insane… Worse still, the experience of segregation, powerlessness, depersonalization, mortification, and dehumanization… were enough to drive a normal person insane,” wrote Rael Jean Isaac and Virginia Armat in Madness in the Streets.

Experts in and out of the field argued that these hospitals were “superfluous” institutions, sites of “therapeutic tyranny,” and “merely a symptom of an outdated system that is crying for a complete remodeling” that should be “liquidated as rapidly as can be done.” By 1973, the year Science published “On Being Sane in Insane Places,” California governor Ronald Reagan closed Modesto, Dewitt, and Mendocino State Hospitals, converted Agnews into an institution for people with developmental disabilities (a transition that Bill was caught up in), and announced plans to phase out all of the state’s public psychiatric hospitals by 1982. One lawyer summed up the view of the time, arguing in 1974 that patients were “better off outside of a hospital with no care than they are inside with no care.”

Though Rosenhan and his study likely did more to cement public opinion against psychiatric hospitals than any other academic study, the process to close these institutions had started decades earlier—most significantly with the birth of John F. Kennedy’s sister Rosemary.

Rosemary Kennedy’s first hours on earth were unimaginable. The doctor was late when her mother’s water broke. To slow the delivery until he arrived, the nurse told Rose Kennedy to hold her legs together, and when that wouldn’t stop the birth, the nurse pushed the baby’s head back into Rose’s birth canal, restricting oxygen to the newborn’s brain.

From early on it was clear Rosemary was not like her siblings. She had difficulty holding a spoon, riding a bike, and, later, reading and writing. In a family as ambitious as the Kennedys, this made Rosemary a liability. Patriarch Joe Kennedy did his best to keep Rosemary’s condition—the official label was “mentally retarded”—out of the public eye. In society pictures taken of Rosemary there is often a family member with her. In one picture, her father clutches her arm as if to keep her physically restrained. But as Rosemary grew, so did her beauty. She was the most attractive of the Kennedy girls, with a curvy figure, beautiful curlicue hair, a love for fine and shimmering clothing, and a wildly captivating full-faced smile.

They sent her off to various schools, where she eventually learned to read at a fourth-grade level. Over time her gregariousness turned sour. Rosemary started to lash out. While living at a convent, she would disappear for hours in the middle of the night. Whatever she did on those walks was a direct threat to the livelihood of the emerging Kennedy dynasty. If she were to, say, get spotted by the gossip columns or, God forbid, get knocked up, this devout Catholic family would never recover. As her behavior grew more unmanageable, Joe Sr. looked for options outside the convent.

His search led him to two American doctors, Walter Freeman and surgeon James Watts, who had imported the lobotomy from Portuguese neurologist António Egas Moniz. Moniz, who received a Nobel Prize for his work in 1949, was inspired to try radical frontal lobe surgery after reading about two Yale physiologists’ experiments on chimpanzees. Moniz tested the surgery on humans—severely depressed patients and those with chronic schizophrenia. The procedure, which severed the connections between the prefrontal cortex and the rest of the brain, rendered the patient cured (if by “cured” you meant incontinent and zombified, but easier to manage). Neurologist Freeman would adapt this grueling psychosurgery into a far easier in-and-out procedure nicknamed the ice-pick method, which involved stupefying a patient with rounds of electroshock therapy and then inserting a surgical instrument through the eye socket and—swish, swish, swish—in a few minutes scrambled the structure of the brain.

Lobotomies were not intended for someone with Rosemary’s impairment, but that was no impediment. Lobotomies were used to treat everything from homosexuality to nymphomania to drug addiction, all of madness lumped together and treated with one simple surgery, a callback to the early nineteenth-century theory of unitary psychosis. Sixty percent of lobotomies were conducted on women (one study in Europe found that 84 percent of lobotomies were conducted on female patients), even though women made up a smaller segment of the psychiatric population in state hospitals.

Rosemary’s sister Kathleen “Kick” Kennedy, a journalist, looked into the surgery and told her mother, “It’s nothing we want done for Rosie.” It’s unclear if Kick’s conclusion ever reached her father, however, because he went ahead and booked an appointment with Dr. Freeman and Dr. Watts at George Washington University Hospital in 1941. Rosemary was only twenty-three years old.

The doctors kept detailed notes on their surgeries, so we have a good sense of what Rosemary endured. Dr. Watts drilled burr holes on either side of Rosemary’s head, near her temples, and made an incision big enough to allow a small, anvil-shaped instrument—something that looked disarmingly like a tool a bartender would use to make a cocktail—to enter her prefrontal lobe, the most forward part of the brain, associated with higher executive functioning, decision making, and planning for the future. As Rosemary recited a poem or sang a song to communicate her level of cognition, Dr. Watts swiveled the instrument back and forth, back and forth. By the fourth swing, Rosemary became incoherent.

The procedure was an abomination. When she left George Washington University, Rosemary was unable to walk or talk. Only after months of therapy did she regain even the most basic movements. One leg remained forever pigeon-toed, making it nearly impossible for her to get around without help. She communicated with garbled sounds and later graduated to just a handful of simple words. She was like a stroke victim, “a painting that had been brutally slashed so it was scarcely recognizable. She had regressed into an infantlike state, mumbling a few words, sitting for hours staring at the walls, only traces left of the young woman she had been,” wrote journalist Laurence Leamer in The Kennedy Women. This was a vivacious, high-spirited young woman who loved beautiful clothes and dancing, who could charm almost anyone. Her mother was so disturbed by the change, one biographer wrote, that it’s possible she didn’t visit her daughter for more than twenty years. Eventually the family moved her to a private one-story brick home at St. Coletta School for Exceptional Children in Jefferson, Wisconsin, a convent run by Franciscan nuns, where she remained until her death in 2005 at eighty-six. The treatment of Rosemary Kennedy would remain a stain on the family. Rose would later say that what they did to Rosemary was the first of the many tragedies to strike her family, and it brought “yet more danger, death, and sorrow to the Kennedy household.”

Rosemary and the “care” she received at one of the most esteemed hospitals in our country made a deep impression on her brother Jack, the future president. In February 1963, eight months before he was assassinated in Dallas, President Kennedy announced: “I have sent to the Congress today a series of proposals to help fight mental illness and mental retardation. These two afflictions have been long neglected. They occur more frequently, affect more people, require more prolonged treatment, and cause more individual and family suffering than any other condition in American life. It has been tolerated too long. It has troubled our national conscience, but only as a problem unpleasant to mention, easy to postpone, and despairing of solution. The time has come for a great national effort. New medical, scientific, and social tools and insights are now available.”

His goal was to “get people out of state custodial institutions and back into their communities and homes, without hardship or danger.”

In place of monolithic psychiatric hospitals, JFK made a federal commitment to create a network of community-based psychiatric facilities that allowed people with serious mental illness to live outside asylums. This was based on the emerging community psychiatry theories, a reaction to the darkest hour of modern history. “U.S. Army psychiatrists in World War II had observed that chronic war neurosis (today we might call it post-traumatic stress disorder) could be avoided if soldiers were treated in field hospitals just behind the lines, where they could stay in close touch with their buddies and from which they could be discharged rapidly to rejoin their units,” wrote Dr. Paul Appelbaum in his book Almost a Revolution. Likewise, community psychiatrists wanted patients to leave state hospitals and stay (for brief periods of time) in acute units, while long-term patients would be released into the arms of the public. Research that showed how “prolonged hospital stays might themselves have negative effects on patients, rendering them ‘institutionalized’”—words that Ward 11 staff, Soteria House founders, and Rosenhan himself would have relished—only supported their push. In addition, the new drugs made it possible to imagine a world where the most severely ill could take their meds and live full lives outside the hospital.

“It should be possible, within a decade or two, to reduce the number of patients in mental institutions by 50 percent or more.” With this pronouncement JFK signed into law the 1963 Community Mental Health Act, one of the first steps in the phasing out of psychiatric hospitals, which launched “an ongoing exodus of biblical proportions.”

Fifty percent or more. It seemed wildly idealistic, but it was conservative considering what would actually happen.

President Lyndon Johnson followed JFK’s measure by signing a bill that led to the creation of Medicare and Medicaid in 1965—federal health care insurance coverage for the poor and elderly—and assigning the federal government the role of “payer, insurer, and regulator” of mental health services. A Medicaid caveat in the form of the Institutions for Mental Diseases (IMD) exclusion prohibited the use of federal Medicaid dollars to fund psychiatric facilities with more than sixteen beds, meaning that most state hospitals, which were almost always larger than sixteen beds, would not receive federal funding. States, realizing that they could transfer the costs of care to the federal government if they closed their hospitals (and if they didn’t would be left shouldering the burden of the sickest), began discharging and closing hospitals at unprecedented clips, leaving the mentally ill to vie for limited beds in psychiatric units of general hospitals or the sickest and oldest to nursing homes, which Medicaid covered. The IMD exclusion is still intact and Medicaid continues to be the United States’ largest funding source for mental health care. This all funneled individuals with serious mental illness into more “‘medicalized’ treatment settings” (like overtaxed emergency departments) and introduced a trend of privatization of quality mental health care that continues today. Despite the passage of a federal mental health parity law in 2008, insurance companies now reimburse mental health professionals eighty-three cents for every dollar covered for primary care, and just over half of psychiatrists take insurance (compared with 89 percent of the rest of medical professionals).

At the same time, civil rights lawyers filed lawsuits against hospitals in the name of human rights. The Bazelon Center for Mental Health Law, founded by a group of lawyers and mental health professionals committed to the rights of people with mental disabilities, opened in Washington, DC, in 1972. Patients, who previously had no representation or recourse (remember when Rosenhan was forced to sign away his rights to be committed?), now had an army of lawyers working to keep them out of hospitals, or to help them get discharged as quickly as possible. A series of landmark acts, including the Lanterman-Petris-Short (LPS) Act that Bill encountered during his stay, pushed for patients to be treated in the “least restrictive settings” with minimum patient-to-staff ratios. Stricter commitment laws required patients to either be “gravely disabled” or pose an imminent threat to themselves or others to be committed. Vague notions of voices that say “thud, empty, hollow” certainly would no longer do it. There was the 1971 Wyatt v. Stickney ruling, which said that if the state was unable to meet the standards of minimally required care, you could not force hospitalization. In response, the hospitals didn’t revamp and update. They closed.

Because, most opportunistically, shuttering these institutions would save some serious cash, making everyone along the political spectrum happy. The “mental illness treatment system had been essentially beheaded,” wrote psychiatrist E. Fuller Torrey.

And as Bill’s and Rosenhan’s hospitalizations and Rosemary Kennedy’s lobotomy proved, good riddance. Right?

JFK would not live long enough to see his work’s aftermath. From the year of his death, 1963, to the publication of Rosenhan’s study in 1973, the total resident population in state and county psychiatric hospitals dropped by almost 50 percent, from 504,600 to 255,000. Ten years later, the US psychiatric population would drop another 50 percent to 132,164. Today 90 percent of the beds available when JFK made his speech have closed as the country’s population has nearly doubled.

Trouble is, for all of its idealism and promise, the dreams of community care were never actualized because the funds never materialized. The money was intended to follow the patients. It didn’t. The community care model at its very best provided nominal care to the least impaired. Those with the most severe forms of these disorders were ignored or cast aside. The new community facilities themselves actually resembled “small long-term state hospital wards,” wrote Richard Lamb as early as 1969. “One is overcome by the depressing atmosphere.”

The government policies that closed these institutions did not embed people more deeply into the community—they pushed them further outside onto our streets and into our homeless shelters, even, as we’ll see, into our prisons.

As one psychologist, who practices today in the shadow of deinstitutionalization at a forensic psychiatric facility, told me: “We could see the light at the end of the tunnel. We didn’t know that it was an oncoming train.”