The British novelist Clare Allan wrote, “There seems to be some sort of agreement, a contract you sign when you first break down, that should you ever emerge from your madness and re-enter the ‘normal’ world, you promise never to mention what took place. The stigma attached to mental ill-health robs people of their experience, effectively tells them that for months or for years, or recurrently (as is often the case), they didn’t exist at all. Is it any wonder groups such as Mad Pride find a need to address the issue of self-esteem?” Like other pride movements chronicled in this book, this one supports people with an intractable condition in their feelings of wholeness and worth. It emphasizes the cultivation of good self-care practices to support physical and emotional well-being. Rather than harkening back to a prepsychotic state, Mad Pride activists focus on concrete steps that mentally ill people can take to build a present life that is both functional and truthful. Responding to Allan, one online commentator said, “According to my doctor, I’m mad. I’m also proud of who I am and it’s daft to pretend that my madness isn’t part of that.” The Icarus Project website explains, “We are a network of people living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders.”
Much can be said for accepting yourself with whatever conditions you carry, but the obstacles to doing so are particularly formidable for schizophrenics. Some whom I met had found meaning in the condition, but none seemed particularly exultant about it. Despite moving statements made by advocates, Mad Pride does not have anything like the reach of the autism rights movement. I suspect that is partly because the agony can be so relentless in schizophrenia, but even more because of the illness’s late onset. People with autism cannot imagine themselves or be imagined without it; it is intrinsic to their character. People with schizophrenia can imagine themselves without it because most didn’t have it for the first two decades of their lives. If they posit “wellness,” they are conceptualizing not an inaccessible fiction, but a familiar past. Mad Pride is positive for those who subscribe to it, and it has robust philosophical implications, but most people who descend into psychosis experience it, until negative symptoms and antipsychotics numb them, as a torment.
Clare Allan, having recognized the need for Mad Pride, said, “People have to play the cards they’re dealt, and they become who they are through doing so. But would anybody seriously wish for their child to develop mental health problems? Their partner? Their friends? The reality I recognize from my experience, and from that of my friends and what I’ve seen on the wards, is hopelessness and despair.” Alison Jost, of Yale’s Interdisciplinary Center for Bioethics, wrote that it seems easy to compare Mad Pride with disability rights. “But in fact,” she went on, “no matter how destigmatized our society becomes, mental illnesses will always cause suffering.”
• • •
Walter Forrest’s son Peter lapsed into schizophrenia his junior year in high school, arguing with his siblings so aggressively that he had to be physically restrained. “It was like the top of his head blew off,” Walter said. “He’d always been Mr. Popularity, and then he had some minor social adjustment problems, and now we were wrestling him to the ground.” A few weeks later in the car, Peter said, “Dad, don’t hold the steering wheel that way, or I’m getting out.” Walter was perplexed. “Peter had an offbeat sense of humor, so I was groping,” he said. “A few days later, Peter found his way to the shrink’s office at his school and melted down into total helplessness.”
Peter rapidly developed acute illness. His father noted a greater loss every day. One night, Peter ambushed his father and tried to push him through a window. Eventually, Peter attacked Walter with a kitchen knife, and Walter had to call the police. Peter was put in a secure ward for six months. Like most parents, Walter struggled with the gradual realization that his son’s problems were not transient. Walter explained, “The therapist who helped the most said, ‘You’ve had the star quarterback. He’s run over by a truck, breaks every limb in his body. Your hope now is not that he’ll be a star quarterback, but that he will walk again.’” Peter is now in a residential facility, and he comes to see his father four times a year. “I take him to dinner, and he has a sleepover and goes back,” Walter said. “Is there any positive in the relationship? Does it have its pleasurable moments? No. I would love him to do a minimum-wage job, bag groceries or something, and feel that he’s done something to give himself worth. But the better he gets, it’s almost the worse he gets, the sadder it is—because the ‘might have been’ just breaks your heart. Frankly, it would have been better if he’d died. Better for him, better for everybody. That sounds like the most terrible thing in the world to say. But his life is very, very hard for him, and it’s hard on everyone else. Why didn’t the truck just crush him completely if it was going to do this kind of damage?”
Walter looked for a long minute out the window. “And now I’m going to cry. You know, it is a death. Joy is one of the few gifts we can give to our fellow human beings, especially our children, and I haven’t been able to give any to Peter.”
• • •
People with schizophrenia are avoided, mocked, and misunderstood. Little progress has been made to reduce the stigmatizing use of terms such as crazy, lunatic, and nutty. When One Flew Over the Cuckoo’s Nest, the film that shaped a generation’s perceptions of schizophrenia, was filmed at Oregon State Hospital in 1975, the producers had the opportunity to use actual mental patients as extras, but declined because they “did not look strange enough to match the public image of mentally ill people.” Though the Americans with Disabilities Act is supposed to shield the mentally ill, few protections are available to them. The number of both outpatient programs and in-hospital facilities is woefully inadequate, yet circumstances under which people with schizophrenia can live independently are also scarce. An American study from 1990 showed that 40 percent of landlords immediately rejected applicants with a known psychiatric disorder. People who are open about their schizophrenia are essentially unemployable, even if they have been asymptomatic for years. Only about 10 to 15 percent of them sustain full-time employment, but the structures of work can prove enormously beneficial; one leading researcher has noted, “No treatment I have seen is as effective as a job.” Homeowners fight hard to keep treatment and residential facilities out of their neighborhoods. James Beck of the NIMH put it bluntly: “Many people can’t tolerate working with chronic schizophrenics. Doctors and nurses don’t like to treat patients who don’t recover.”
Although they are erratic in their behavior, most people with schizophrenia are not dangerous to strangers. Schizophrenics are five to eighteen times as likely to commit homicide as are members of the general population, usually in connection with substance abuse; even including substance users, however, only 0.3 percent will commit homicide. A 1998 study found rates of violence in psychiatric patients who are not substance abusers consistent with those in the general population, and such violence is five times more likely to be directed at family members. Almost one in four families living with schizophrenic relatives experiences physical harm or the threat of it. Nonetheless, because schizophrenic violence may respond to hallucinations and be directed at random strangers, it has the same dark-hand-of-fate feeling as plane crashes, which frighten us so much more than fatal car accidents even though they are considerably rarer.
In 2011, two cases of homicide by people with schizophrenia made headlines: Deshawn James Chappell’s murder of Stephanie Moulton, a social worker who was caring for him; and Jared L. Loughner’s spree in Arizona, during which he killed six people and wounded thirteen others, including US Representative Gabrielle Giffords, who was severely injured. Both men were thought to be potentially violent before these incidents took place, and both stories give evidence of a failed system.
When Deshawn Chappell was growing up, his mother, Yvette, thought he would
be a minister. At nineteen, he changed. “He would say the devil was telling him to do things,” Yvette recalled. “He would talk about curses and hexes.” By twenty-one, he was constantly showering because his skin was crawling; he couldn’t sleep because voices kept him awake. He nonetheless refused medication because of its side effects. Not until after his fifth arrest for assault was he referred to the Department of Mental Health. That arrest, in November 2006, was occasioned after Deshawn’s stepfather, who had raised him, let him go from a job. Deshawn fractured three bones in his stepfather’s left eye socket. The police report said that when officers arrived, the stepfather was “holding his head with a cloth and had blood running from his mouth.”
Despite Deshawn’s violent criminal record, he was passed around the state from facility to facility and ultimately placed in a group home where no one on staff was fully informed of his history. Stephanie Moulton, a petite young woman, was left on her own to care for seven people with schizophrenia because the budget didn’t allow for additional support. The system failed her and her assailant. On January 20, 2011, Deshawn Chappell beat Stephanie Moulton, stabbed her to death, and left her seminude body in the parking lot of a church. “It was totally unnecessary for her to get murdered on the job when all she was trying to do was help people,” her mother said. Yvette Chappell expressed deep sympathy for Stephanie’s family. She explained that she had tried to get treatment for her son for years.
Unlike Deshawn Chappell, Jared Loughner had never been institutionalized. But before his rampage at a Tucson supermarket where Representative Giffords was holding a meet and greet, dozens of people knew of his instability. His behavior at Pima College the previous year had become increasingly bizarre and threatening; the police were called to deal with him on five occasions. In an e-mail months before the shoot-out, a fellow student said, “We have a mentally unstable person in the class that scares the living crap out of me. He is one of those whose picture you see on the news, after he has come into class with an automatic weapon.”
In September 2010, Jared Loughner was suspended from school and told he could not return until he had a mental health clearance. “It seemed obvious that he had mental problems,” one of his professors told the Wall Street Journal. “He was speaking language X and everyone else was speaking language Y.” Two months after his suspension, Jared bought a gun. Two months after that, he rampaged. His parents, with whom he lived, said only, “We don’t understand why this happened.”
Larry A. Burns of federal district court judged Jared mentally unfit to stand trial in May 2011, four months after his attack. The New York Times reported, “Mr. Loughner, 22, rocked back and forth in his chair during the proceedings, buried his face in his hands midway through and interrupted the judge with an outburst. ‘She died right in front of me. You’re treasonous.’” The psychiatrist appointed by the court found that Jared “experienced delusions, bizarre thoughts, and hallucinations.” Burns would eventually put him on forced medication; his lawyers argued, “Mr. Loughner has a due-process right to bodily integrity free of unwanted, forcible administration of psychiatric medication.” An appeals court took him off medication; Jared went fifty hours without sleeping, paced until he had open sores on his feet, and stopped eating. The prison restarted medication on grounds that he was a danger to himself, and Burns upheld their right to do so.
Jared was put back on medication on grounds that he was a danger to himself, but if he could be rendered competent to stand trial, the judicial consequences could be lethal. Cynthia Hujar Orr, a past president of the National Association of Criminal Defense Lawyers, asked, “Is it ethical and proper to help someone regain competence just to go after them for a death penalty offense or a murder offense?” A prison psychologist said that Jared sobbed uncontrollably whenever she met with him and covered his face. He ultimately pleaded guilty to avoid the death penalty, but his crime and illness constitute a punishment greater than any achieved by the criminal justice system. Jared Loughner, like Deshawn Chappell, is undoubtedly in sustained agony.
The facility containing the largest number of schizophrenics in the United States is the Los Angeles County Jail. At least three times as many mentally ill people are in jail as are in hospitals. Nearly 300,000 people with mental illnesses are in jail in the United States, most convicted of crimes they would not have committed if they had been treated; another 550,000 are on probation. Few are in for violent crimes; most are there for the myriad small transgressions that are inevitable for people impervious to social reality. They are dealt with not by doctors, but by police officers—and then prison guards and other criminals. A quarter of Massachusetts inmates required mental health treatment in 2011, up from 15 percent in 1998, according to the Department of Correction.
If one weighs the savings to the mental health system against the added burdens to the penal system, the penny-wise, pound-foolish nature of such budgeting becomes ludicrously obvious. The cases against Deshawn Chappell and Jared Loughner will cost the taxpayers hundreds of thousands of dollars. One can’t help but wonder whether, for a fraction of that cost, their victims might still be living. While accommodating people with physical disabilities must be undertaken out of moral conviction, adequately treating people with severe psychiatric illness is a win-win situation; if moral conviction fails, economic self-interest should prevail.
• • •
“When other little girls were trying on their mothers’ high heels, I was wrapping myself with Ace bandages, ’cause I thought it looked cool,” Susan Weinreich recalled. Susan had a compulsion to bite her lips, and they were usually scabbed or openly bleeding. Ashamed, she would say to her mother, Bobbe Evans, “Why can’t I stop?” Bobbe would just say, “You’ll grow out of it.” But schizophrenia did not manifest fully until Susan entered the Rhode Island School of Design (RISD) in 1973.
“I knew there was something wrong all along,” Susan said, “but it wasn’t until my freshman year that it became obvious to other people.” During Susan’s freshman year, her father left her mother. “That jostled everything enough so that symptoms started to bubble to the surface,” Susan said. Unable to do her classwork, she began seeing a Freudian psychoanalyst, whose treatment involved regression to childhood states. Unfortunately, regression was one of Susan’s symptoms, and she needed to move away from it, not deeper into it. “I was horribly dependent on him,” she said. “I basically stayed in during the day and came out only at night, when I walked the streets and studied the moon. I saw deformed bodies; bloody faces; devils; bodies hanging from trees. The real people I saw all appeared distorted. They were missing arms, legs. I remember being very threatened by stains in the asphalt, and plastic bags caught in the bushes in January.”
In her sophomore year, Susan entered RISD’s glass-blowing department. “I had an intense need to be around fire,” she said. In the first semester of her junior year, the school asked that she withdraw. “I just was imploding, burning myself with cigarettes and putting my fists through windows. In my better moments, I would go to the Brown medical library, looking, looking, looking for what was wrong with me.” Susan had three separate hospitalizations that year. The doctors would explain that she needed to be on medication for the rest of her life, but wouldn’t tell her what was wrong with her; she, in turn, refused to give the hospital the contact information for her parents. “Even though I had no understanding of what was happening, I had a very strong, strong desire to protect my family. I believed that I had baby breasts and adult breasts, and that the baby breasts were going to drop off, and the adult breasts would take their place. But I believed that if my mother came to my apartment and stayed overnight, these little men and women were going to come out of my breasts. The men were carrying scythes, and the women were carrying burlap bags. They would hurt her. I was afraid my mother would see them, which meant she would know about the devil in me. I couldn’t tolerate that.”
When she took in her brother’s cat while he was traveling the summe
r following her sophomore year, the animal hid under an old, green vinyl reclining chair. “I thought the chair was infested with fleas, and then the fleas became sperm. I took out a bucket of paint and painted the whole chair white and took out a kitchen knife and started stabbing it.” She didn’t bathe for months on end and didn’t brush her teeth for ten years. “I was like an animal, my hair knotted and greasy. I would cut myself and paint on the walls with my blood.”
Bobbe had never heard the word schizophrenia until Susan’s analyst called in 1979 to find out what kind of insurance Susan had, because he had finally decided that she needed to be hospitalized, perhaps for life. “That snapped my mother into something,” Susan said, “and she came up to Rhode Island, threw me in the car, and tore me away from this guy.” Bobbe took Susan to a doctor who said she should be hospitalized at once. Susan had developed facial hair, possibly in response to medication, and decided to let it grow. “When I saw this daughter, who I wanted to be this cute little thing, with hair on her face, it was just horrible,” Bobbe said. Susan said, “I had all kinds of delusions about what that meant. It was down to my jawbone, and it was very thick, coarse, sexual hair.” Bobbe decided to take Susan directly to Four Winds Hospital in Katonah, the best mental facility within easy driving distance. Susan was interviewed by Sam Klagsbrun, who ran the hospital. “I can still remember sitting in his office that day, and I even remember the Stars of David I had carved into my boots and drawn on my green shirt,” Susan said. “The cigarette burns in it. He told me what was wrong with me. He gave me my diagnosis.” Susan was admitted to Four Winds.
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