Esmé Weijun Wang is the author of The Border of Paradise and the forthcoming essay collection The Collected Schizophrenias (Graywolf Press, 2019), which “undertakes an investigation into life with schizoaffective disorder and chronic illness with narrative drive and prose of confiding grace.” One of Granta’s Best Young American Novelists, she has written for The Believer, Lenny Letter, Salon, and elsewhere. She lives in San Francisco.
An excerpt from The Collected Schizophrenias:
The debate over AB 1421 touched upon crucial issues of autonomy and civil liberties. The bill makes the crucial assumption that a person who displays a certain level of mental disorder is no longer capable of choosing treatment, including medication, and therefore must be forced into doing so. Sartre claimed, “We are our choices,” but what has a person become when it’s assumed that said person is innately incapable of choice?
“If only I could have gotten my shit together, everybody else’s lives would have been fine, was the message that I was getting constantly, and so I was responsible for other people’s happiness.”
Julian Plumadore is the manager of the anti-stigma SOLVE (Sharing Our Lives, Voices, and Experiences) speakers’ bureau, and former Community Advocate, of the Mental Health Association of San Francisco, a “peer-run, recovery-oriented organization.” I know Plumadore because I’ve been a speaker for SOLVE since 2013, and have heard in his talks the way he understands his recovery. He describes his story as one in which he was targeted as the “identified patient”; the term is based on research on family homeostasis, and describes a pattern of behavior in which a dysfunctional family identifies one of its members as mentally ill, though their symptoms are actually manifestations of the family’s pathology.
Plumadore is against forced treatment. I don’t think I’ve ever seen him in anything but a button-down shirt, tie, and slacks, which is a conscious choice on his part; it’s what he wears to meetings like the AB 1421 hearings, where the visual difference between the pro- and anti-AB 1421 constituents are obvious. “The rooms were divided,” he said. “They were visibly split in two, and the power imbalance in those rooms was tangible. On one side of the room you’d have the people who basically hold the power in society. Generally white, upper-middle-class, well-dressed professional people, the family members; and then on the other side of the room, you’d have a much more diverse group, generally more dressed down. And,” he finished wryly, “you could see in the room who was actually having the mental health issues, and who were the people who were essentially trying to get them committed.”
He told me about one woman he spoke to at an AB 1421 hearing. A mother. She spoke to him, he said, about her 40-year-old son, who is “living at home with her where he belongs.” To her, she is “his only hope.” He highlights both lines with horror. “They’re so afraid of something bad happening to [their loved ones] out on the street, or out in the rest of the world, or [their family members] can’t take care of themselves, [so] they guard them and keep them home. And that situation becomes increasingly tense and frustrating for everyone involved.”
He knows about these situations, he tells me, because he was one of those people. The people who support forcible treatment sometimes don’t believe him when he talks from personal experience about abusing substances, being homeless, or acting, as he describes, “scary in public.” He’s better now, he tells me, because he was finally told by someone else that he himself knows better than anyone else what he needs. For him, that included harm reduction techniques instead of involuntary rehabilitation, as well as estranging himself from the rest of his family. Because he could discern a method of recovery for himself, he believes that the issue of personal, bodily autonomy must take precedent. He speaks of those with mental illness almost universally experiencing the effects of trauma when forced into treatment, and disagrees with the concept of “hurting someone to help someone.” “We have the ultimate decision about what we’re going to allow into our bodies, what we’re not, and the decisions that we make about our own lives,” he said.
A crucial concept in the discussion of schizophrenia, psychotic disorders, and treatment is that of how far the possession goes—or, in psychiatric terms, the level of “insight” the individual is capable of. To have poor insight is to have a lack of awareness about one’s own condition. A fundamental argument for forcible treatment is that the unwell individual simply doesn’t understand that they’re ill, and therefore lacks the ability to decide for themselves whether, for example, to take the recommended medication. Whether a person diagnosed with severe mental illness will take medication is an issue that repeatedly comes up in communities affected by mental illness; psychiatrists use the pejorative term “medication noncompliant” to describe those patients who won’t take recommended medications, no matter the reason for the patient’s decision.
I asked Beth, whose adult son lives with schizoaffective disorder, what she wishes people would better understand, or what they currently misunderstand, about psychotic disorders. “There’s all this stuff about, Give people information and they’ll seek help on their own,” she said. “Somebody who has a mind that they cannot trust because it’s been taken over by whatever chemicals are not allowing them to think straight needs help in getting care, and they might need to be forced into it. It’s comparable to Alzheimer’s. Not to say that people with paranoid schizophrenia are demented or stupid, but they lose the ability to make rational decisions.”
The mind has been taken over. The mind has lost the ability to make rational decisions. There’s something in there, but it’s not whomever it is we formerly believed it to be. Depression is often compared to diabetes—in other words, it’s not your fault if you get it, and you’ll be fine if you just take care of it. Schizophrenia, on the other hand, is compared to Alzheimer’s—it’s still not your fault if you get it, but there’s no fixing it, and though you may not intend to be a burden, you’ll still be one until you die.
I do have experience with the loss of autonomy that comes with involuntary treatment, as well as the status that comes with being described as lacking a sense of one’s own illness: I was hospitalized against my will in 2002, 2003, and 2011, and the records from my first involuntary, inpatient psychiatric hospitalization stated that I had “poor insight.”
It is hard to convey the horror of being involuntarily committed. First, there’s the terrifying experience of forcibly being put in a small place where you’re not allowed to leave. You are not allowed to leave, but you’re also not allowed to know how long you’ll be there, because no one knows how long you’ll be there. You don’t have the things that you love with you: your journal, the bracelet your grandmother gave you, your favorite socks. Your teddy bear. There are no computers. In the hospitals where I’ve stayed, the only phones allowed were the landlines, which could be used at certain times of day for a certain period, causing patients to jockey for position by the phones and to bicker over who’s been taking too long.
Sometimes, someone will be allowed to bring something you cherish to you during visiting hours, although this must take place after a nurse inspects the goods; a lot of the time, your possessions won’t be permitted into the ward because they include a sharp point or a wire coil or a dangerous piece of cloth. You’re not allowed to choose what you eat, and within the limited choices that do exist, you’re forced to choose only between things that are disgusting. You are told when to sleep and when to wake up. If you spend too much time in your bedroom, it indicates that you’re being antisocial; if you do sit in the common areas, but don’t interact with the other patients, you’re probably depressed or overly inward or perhaps even catatonic. Humans might all be ciphers to one another, but people with mental illness are particularly opaque because of our broken brains; we cannot be trusted about anything, including our own experiences.