Far From the Tree

by Solomon, Andrew

  The World Health Organization recently undertook a vast study to see where the best outcomes were for people with schizophrenia. The best short-term results were in Nigeria and India—where medical treatment is often extremely basic. The reason appears to be the family support structures that are built into those societies. “It was very difficult for me, when I first trained here, to understand how a family could drop off their son or daughter and just leave,” said Cyril D’Souza, who is Indian. “If you adjust for everything else—medication, dosages, access to care, socioeconomic status—the ones who are doing well tend to have meaningful family relationships.” Whether the kinship structures of developing societies are preferable to Western ones for people in perfect health is debatable, but the division of labor within extended families clearly allows for a higher quality of care for people with mental illnesses. In Senegal, when someone is taken on as an inpatient at a mental hospital, a member of his family usually accompanies him there and stays for as long as he does. Such habits reassure psychotic people that they are permanently knitted into the social fabric.

  In the West, conversely, families often disenfranchise schizophrenics. Some people with schizophrenia lack insight into their condition and have to be strong-handled, but others are the primary experts on their own condition, and some have offered their families suggestions on how to interact with them. Support groups for families of people with schizophrenia have proliferated in the last twenty years as the stigma around having produced a mentally ill child has diminished. Esso Leete, founder of the Denver Social Support Group, has schizophrenia and pleads, “Criticize only constructively. Do not write off all conflict as symptomatic of illness. Find a role for us in the family other than being the ‘sick’ member.” One support-group website proposes, “Approach delusions in a spirit of shared inquiry. Don’t push if the person starts to get upset.”

  While the positive symptoms of schizophrenia are most disturbing and striking to outsiders, the negative symptoms are frequently more burdensome for families coping with a son’s or daughter’s hostility, absence of personal hygiene, and listlessness. It is hard to remember that these are not flaws of character. The father of one schizophrenic said, “My loving, bright, amusing son was now not just very ill, but had also turned distant, cold, bitter, insultingly rude. It would have been easy to dislike him intensely.” Twenty-five years later, the father was still struggling with this problem: “How do you keep on loving a son who can be an unpleasant stranger?” One mother said, “These kids die but they never get buried.” An activist group called Families of the Mentally Ill Collective, formed by families of schizophrenics in Massachusetts in the early 1980s, stated, “The sick child inhabits a different world and that world, consciously or unconsciously, terrifies the parents.” Schizophrenia cannot be cured with encouragement and love alone, but it can be hugely exacerbated by neglect.

  Malcolm Tate, a man with severe paranoid schizophrenia, made murderous threats against his family for sixteen years while they tried persistently to find him treatment. He was repeatedly hospitalized, repeatedly released too soon, and would not take medication on his own. Finally, in December 1998, his mother and his sister drove him from their home in South Carolina, and his sister shot him to death by the road, then wept. “I was scared that one day Malcolm was going to lose his mind and harm me and my daughter, and I just didn’t know what else to do,” she said at her trial. She was sentenced to life in prison.

  • • •

  Rosemary Baglio’s family is riddled with schizophrenia. Her uncle came home from World War II a little “touched.” He lived with Rosemary’s family in Malden, a working-class, Irish suburb of Boston, and as a girl, Rosemary loved to go up to his room. On good days, he would put rolls in the player piano and show the kids Irish step-dancing. On bad days, he would argue with his hallucinations. When Rosemary was in her late twenties, her brother Johnny became psychotic at age seventeen. Rosemary told her mother that something was wrong, but her mother refused to hear it. When Johnny started smashing things, Rosemary was the one who took him to Massachusetts General Hospital. “My mother wouldn’t let anyone visit him, other than the family,” Rosemary recalled. “We were never to tell anybody he was mental. So Johnny just completely lost contact with everybody.”

  Rosemary eventually had nine children. Her third, Joe, was the first boy in her family. “He had beautiful auburn hair and soft brown eyes and dimples, and he was just sweet,” she said. “Everybody loved Joe.” In high school, Joe began to have troubles. His parents thought he was getting into drugs. His grades dropped. He stayed up all night. “Finally when he was seventeen, I told him, ‘Daddy and I are taking you to be examined. We have to find out what is going on.’ He was terrified.” That very day, he had his first real breakdown. “The kitchen had a long pantry with a window at the end of it, and the cabinets were all glass,” Rosemary said. “I came home and it was all smashed, and there was blood all over the kitchen ceiling.”

  Rosemary found him checked into the hospital, with a severed artery in his arm. When she got there, Joey said, “I’m sorry, Ma, I’m sorry.” When she wept, he reasoned, “It’s better I’m here than any of my sisters.” He stayed for a month.

  Rosemary was determined not to repeat her mother’s imposed isolation of Johnny. “I was very sad, but he was sick and that was it. I was up-front about exactly what was going on.” Joey finished high school and found a job in a photography store. Then one day Rosemary got a call that he was running in traffic and screaming incoherently. When he emerged from that hospitalization, Rosemary decided to find him a halfway house, but within a year he was psychotic again. The Tri-City Authority, responsible for mental health services in Malden, insisted that he was not sick enough to be hospitalized because he knew his own name and address. He was living on a barren, rocky slope above Malden; Rosemary wouldn’t let him come home because she was afraid he would harm his siblings. “Can you sacrifice the other eight for the one that’s sick? He was so gentle underneath that if he ever did hurt somebody, how would he live with that afterwards? I had to protect him, too.”

  To keep contact, she promised to pay for Joe’s cigarettes; she gave him enough money for only one pack at a time, so he had to come by her house every day. “I’d make sure he had something to eat and give him his money, and off he’d go,” she said. Her husband, Sal, had been unable to cope with his son’s illness; thirty years later, Rosemary insisted that I interview her at her daughter’s house because she said her husband would fall apart if he heard her talking about it. “Thanksgiving was coming, and it was really cold,” Rosemary told me. “I said to the court clerk, ‘You have to get me in to see the judge today.’” Meanwhile, Rosemary told Joe that he’d have to pick up his cigarette allowance at the courthouse. She pulled him in front of the judge. “There were no soles on his sneakers. He was dirty from lying on the ground all night. I said to the judge, ‘Could you serve Thanksgiving to anybody, knowing your son is living like this?’ The judge committed him.”

  After his condition was stabilized, he was released to Sal’s octogenarian parents in Somerville, five miles away. To maintain good mental health, Joe needed to have daily injections of Prolixin in Malden. “He went the first day by bus from Somerville to Malden,” Rosemary said. “He waited, he waited, nobody there. Got on the bus, went back to Somerville. For three days he went, but the person was out sick, and nobody told us. Joey never got his shots. The fourth day he started hallucinating. He went in the backyard at Sal’s father’s, crawling on the ground like an animal. My father-in-law comes out on the back porch. He says, ‘Joey, you come in and Grandpa will help you.’” Joey attacked his grandfather so savagely that he had to have brain surgery; if he’d died, Joey would have been charged with murder. Joey was committed to one year at Bridgewater State Hospital for the mentally ill.

  “Oh, he was sick,” Rosemary said. “Then they realized his days on insurance had run out. The very next day he was miraculously c
ured, and he was going to come home. I said, ‘If any harm comes to anybody because of what you’re doing today, I’m taking you to court and I’m going to sue you for every penny this place is worth.’” Joey was transferred to another hospital, and he eventually got well enough to leave. By this time, he was in his mid-twenties. Rosemary was open to having Joe at home again, but if she took him in, he would lose services given only to those with no place to go. She finally installed him in a halfway house with his uncle Johnny. In his later years, he devoted himself to taking pictures of the other residents, images striking both for the desolation they portray and for the kindness with which they portray it. He also drew, a skill he’d had since childhood. His primary psychiatrist still has a picture Joey drew hanging in her office, an ink sketch of himself. “You have to really look closely,” she said when I saw it, “but there’s another man in Joe’s ear. That’s the voices whispering to him.”

  On April 5, 2007, Johnny choked on a piece of meat and died. Two days later, Joey was diagnosed with lung cancer. “As soon as he was diagnosed, we moved him right home, consequences be damned,” Rosemary said, weeping. “Every day he had chemo. They found it in his brain, started another kind of chemo. Then it was back in the lung. And he never complained. Joey said to me, ‘Ma, it looks like I’m not going to make it.’ He says, ‘Ma, if I’m fighting, let me fight. But if I’m slipping away, please let me slip away.’ That’s what happened. He just slipped away right with me sitting there.” Johnny and Joe are buried side by side.

  When I met Sal, Joey had been dead for six months, and Sal was a shadow of a man. He was down to 112 pounds, gaunt and sorrowful. Rosemary was overflowing with her story, but Sal’s sadness had turned him entirely inward. “Can I make Sal better?” Rosemary asked. “No. Can I make him want to live? No. I have been fighting for Joey for thirty-two years, I’ve been protecting him and fighting for him every inch of the way. And I couldn’t save him. I couldn’t save him.”

  Six months before Johnny choked, Rosemary had put her parents’ house, where she had grown up, into an irrevocable trust. “I did it in case the halfway house didn’t keep going, so that if those two were alive and we weren’t, they would never be on the street. It’s set up now so that if any of my grandchildren develop this, which is likely, they cannot become homeless. We’re just waiting to see who’s next.”

  • • •

  Schizophrenic self-advocacy is different from Deaf rights or LPA politics or neurodiversity because members of those movements are presumed to have an accurate understanding of themselves. They are often accused of not appreciating mainstream reality; dwarfs cannot really know what it’s like to be tall, and people with autism may not conceive of the pleasures of social intelligence. Their comprehension of their own circumstances, however, is usually sound. The defining quality of schizophrenia is that it entails delusion, which complicates its claims on identity. Are people who gain a sense of coherence from their schizophrenia achieving self-acceptance, or are they in a web of denial that is a symptom of their illness? Schizophrenics’ own decisions are complicated by anosognosia: having as a symptom of your illness the belief that you don’t have an illness. In the Jacobean play The Honest Whore, Thomas Dekker writes, “That proves you mad, because you know it not.”

  Schizophrenic self-advocacy raises awkward ontological questions. Is there a self that is more real than a patient’s own current experience, a true self that can be teased apart from the symptomatic one? “We should not be in the business of choosing selves,” Elyn Saks has written in her memoir of her schizophrenia. One father said, “I thought my son’s getting better would mean that he didn’t hear the voices. His getting better only means that he doesn’t listen to them as much.” I sometimes think that the emphasis on insight among psychotic people is like our focus on contrition among criminals. Self-awareness and remorse imply that aberrant people are more like us than their actions suggest, and that consoles us. But they serve little advantage unless they change behavior. Though intelligence is in general associated with better life outcomes for people with schizophrenia who survive it, schizophrenics with higher IQ are more likely to commit suicide than those with lower IQ; insight begets lower self-esteem and more depression, even for those who do better at some kinds of self-care. Further, those who are delusional are less likely to commit suicide than those whose delusions have gone away—even though some schizophrenics commit suicide because of command hallucinations. This insight that mainstream society wishes upon people with schizophrenia allows them to act in accordance with what the world expects. But it shouldn’t be misconstrued. “You have no idea how many people you interact with who are hearing voices, but have the insight not to pay attention to them,” John Krystal said. “I’m in awe of the patients I see, many of whom are functioning incredibly well despite constant hallucinations. Understanding what’s going on saves them. But it doesn’t make them happy.”

  A recent New Yorker article described Linda Bishop, a woman with psychosis whose hospital records said that she was “extremely bright” and “very pleasant,” and “denies completely that she has an illness.” She refused to sign any paperwork that said she was mentally ill. The article explains, “When psychotic, she saw herself as the heroine in a tale of terrible injustice, a role that gave her confidence and purpose.” Linda eventually starved herself to death in an abandoned house, believing she was doing the Lord’s will, and apparently at peace inside her own madness—happier, in many ways, than Krystal’s wiser patients.

  The Mad Pride movement believes that self-determination is a basic human right that should be extended to people with schizophrenia and other mental illnesses. Bringing together people who are afflicted with psychosis, it builds a feeling of horizontal identity among people who may have little other community. Members seek to minimize reliance on psychotropic medications and take control of their own healing; Judi Chamberlin, one of the first activists, said, “If it isn’t voluntary, it isn’t treatment.” Gabrielle Glaser wrote in the New York Times, “Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.” Mad Pride has inspired events all over the globe, including recent demonstrations in Australia, South Africa, and the USA that have drawn both supporters and voyeuristic members of the public. An organizer for the Asheville Radical Mental Health Collective, a Mad Pride group in North Carolina, said, “It used to be you were labeled with your diagnosis and if people found out, it was a death sentence, professionally and socially. We are hoping to change all that by talking.”

  Mad Pride proponents advocate a wide range of health-promoting practices. David W. Oaks, who heads MindFreedom International and who has a diagnosis of schizophrenia, treats his condition with exercise, peer counseling, diet, and treks in the wilderness; he has refused medication and exhorts others to defy the psychiatric establishment. Of the period when he was forcibly medicated as a young man, he said, “They took a wrecking ball to the cathedral of my mind.” Of his work since then, he said, “The human spirit is eccentric and unique and unconquerable and bizarre and unstoppable and wonderful. So this is really about reclaiming what it is to be human in the face of so-called normality.” Sally Zinman of the California Network of Mental Health Clients said, “David is like the Malcolm X of the psychiatric survivor movement. He’s out there speaking the truth in all its rawness and purity.”

  Oaks has brought the eye of the establishment to his cause; when he organized a hunger strike to protest the biological model of mental illness, the American Psychiatric Association met with the strikers, but found no middle ground and ultimately released a statement that said, “It is unfortunate that in the face of remarkable scientific and clinical progress, a small number of individuals and groups persist in questioning the reality and clinical legitimacy of disorders that affect the mind, brain, and behavior.” More recently the antipharmaceutic
al activist Peter Breggin has pursued a campaign against the use of antipsychotics, saying, “The apparent improvement that patients show is actually a disability, a loss of mental capacity.”

  It is preposterous, even sentimental, to deny the biological nature of mental illness—or, indeed, the biological nature of mental health, however such a state is defined. But it would be unfortunate to dismiss David Oaks and Sally Zinman as merely crazy. Their relationship to Foucault and Laing is like Thomas Jefferson’s to Rousseau, or Lenin’s to Karl Marx. Ideas are the precondition of action, but the philosophers who hatch new concepts rarely put them into practice. Mad Pride represents the literalization of the old saw about the lunatics taking over the asylum. These activists believe they are throwing off a yoke of oppression. They both have a serious illness and have suffered tyrannical subjugation; the question is whether they can address the subjugation without making false claims about the nature of mental health.

  Although most Mad Pride advocates criticize the manner in which medical professionals promote drugs as a primary treatment for mental illness, many rely on these drugs to function and support the right of others to choose for themselves whether to take medication. They insist that more can be done to mitigate side effects for those who must take such medications. Other activists speak of being “pro-choice” about drugs. Pharmacological treatments for schizophrenia carry risk of neurological impairment, metabolic dysfunction, long-term toxicity, diabetes, blood disorders, and rapid weight gain. Many people who initially experience their mental illness as a cataclysmic loss may make private decisions about how much treatment is worth how much side effect. The activist Will Hall has written in his Harm Reduction Guide to Coming off Psychiatric Drugs & Withdrawal, “In a culture polarized between the pro-medication propaganda of pharmaceutical companies and the anti-medication agenda of some activists, we offer a harm reduction approach to help people make their own decisions.”