PART 1: STIGMA AND CULTURAL EXCLUSION

When I was living in Los Angeles, and beginning my college career at Santa Monica College, I did not quite realize the degree to which society socially shuns the psychotic. I had one class (basic English), in which the professor had us introduce ourselves to the class one at a time. All the other students explained interesting things about themselves, what set them apart—some were artists, others had other dreams and ambitions. When it came my turn, I felt pressure to say something interesting about myself also, to say something that would set me apart from the crowd, so that they would know me as unique. I was very naïve. I said basically, "I grew up in Colorado. In high school, I experimented with LSD and became very psychotic. I was put into mental hospitals for the next two years, and when I was finally released, it was from a hospital here in Los Angeles." You might think that this sounds like something that would make reasonable people uncomfortable, that you wouldn’t blame anyone for thinking I had said too much. Of course, had I said I had been hospitalized for leukemia and had fought the disease off and lived, that would be a different story. Schizophrenia is a disease the sufferer ought to be ashamed enough of to know not to tell a room full of strangers about it. But I wasn’t ashamed. Schizophrenia had given my life meaning. When I had been psychotic, my delusional belief system was a meaningful one for me; when I was hospitalized, the struggle I had to go through to stay healthy was also meaningful. I used to tell my therapist in those days, "I’m glad I’m schizophrenic." Schizophrenia is a disease of the personality, so the schizophrenic who says, "I wish I had never become schizophrenic," might as well be saying, "I wish I had been someone else." I was glad to be who I was. But I’m sure without medication I might not be so glad.

But once I had said this to the class, I realized I shouldn’t have. I even realized this in the middle of what I was saying, but once I had said part of it, I had to finish. I felt suddenly ashamed. True, I was accepting of myself as a schizophrenic. But I realized then that others might not be so accepting.

I told my therapist about this a few days later. She said to me, "Why would you say such a thing to complete strangers? You will only distance them from you, and ruin the chance of becoming friends with any of them." This therapist was very sympathetic to the plight of schizophrenics, but she was also a realist. She was not prejudiced against people like me; she worked with many of us, and enjoyed doing so; but strangers would not be so kind. She told me not to tell a stranger I had the disease, but only after that stranger was a friend, who could be trusted with the secret, could I tell him or her.

I had said all this at the beginning of that English class, so I had to attend for the rest of the semester. One day, there was a lecture on the language advertisers use. The lecture was about how they manage to appear to be saying something, while not really saying it. "This cleanser will clean virtually all carpet stains," etc. The professor passed out some ads cut from magazines, and we passed them around. There was one in particular I was looking at, at my desk, which certainly fell under the category of "saying something without saying it". I began to laugh softly at the deceptive, clever ingenuity of the ad writer. The professor wasn’t lecturing at this time, but we were getting ready to go into groups to discuss among ourselves the various ads. I suddenly noticed people pointing at me and laughing in one of the groups. I looked directly at them. "What?" I said. "Are you laughing to yourself?" said one young woman. They all laughed again. I pointed to the ad on my desk, red in the face. "I’m laughing at this," I said. They just sort of giggled and turned their heads away.

Throughout that class, there were many class discussions on feminism, politics, and the role of language in these. I got the impression that people simply shrugged off my comments, though, as if their source could not be trusted. I did not get this sense from the professor. She always gave me respect, and listened to what I had to say. But the other students seemed to regard me as some sort of imbecile, and my therapist had been right: I didn’t end up becoming friends with any of them.

After that experience, so soon after I had begun to live outside hospitals and in society, I began to avoid, and still do, admitting to any non-mentally-ill person that I have schizophrenia. I was only nineteen when I was released from my last long-term hospital, and I went on dates (whom I met at school) like any young man desires to and should. I never told any of them I was schizophrenic, though it was the most overpowering aspect of my life, and had to do with many of my life circumstances. I had to lie all the time. How did I get by without working? My parents were putting me through college (really I lived on disability, with only a small amount of help from my parents). Why did I move to California? To get away from bad influences in Colorado, so that I could get sober (really I had come to enter a hospital there). I had to lie about all these things.

None of these dates, though there were second and third meetings, turned into long-term relationships. Part of the reason for this may have been that, to the women, I appeared mentally unstable. I never had outbursts of anger or yelled or acted irrationally or anything. I don’t mean that I appeared potentially violent. I was simply having a hard time hiding my disorder, as it is, after all, a disorder of the personality. I am not saying these women had no right to reject me: each woman or man may reject whomever he or she pleases, with no more reason than a personal whim. But when, in our culture at large, it is generally agreed upon that psychotic people are not to be made friends, boyfriends, or girlfriends with, this is a problem. This leaves us, after all, without friends, boyfriends, girlfriends, or anyone. We are shy and introverted enough as it is; we don’t need on top of that a culture that socially excludes us. When a normal man goes on a first date, if the woman gives any indication that she is a "psycho woman", he will run as fast as he can. A normal woman doesn’t want to get involved with a mentally unstable man. (Of course, these are generalizations that do not apply to every case.) And this is not the worst part. The worst part is that many reject even our platonic friendship. We realize we cannot expect everything in this life; many of us are willing to go it alone, without marriage and family, for the rest of our lives; I know I am. But we do need friends, and I am convinced that if it weren’t for the culture of exclusion against psychotics, there would be a much lower rate of schizophrenic suicide (10% of schizophrenics end their own lives).

My roommate at that time was a schizophrenic woman I had met at the hospital, and she was much more comfortable with being schizophrenic than I. She took a psychology class at Santa Monica College, and told me the professor had said terrible things about schizophrenics, describing them as less than human and dangerous. She was deeply offended, and after class she told the professor that she was schizophrenic and, basically, that the professor’s view of schizophrenics seemed bigoted. At this point, I would have never done this. When a professor says anything about schizophrenia in a class discussion, and I have an interesting comment that comes from my unique perspective, I will not raise my hand. But if a professor ever told a class I was in that schizophrenics were less than human, I would only quietly drop the class. In a perfect world, free of bigotry, this would not have to be so; but of course the world is not perfect, and I have learned what my place in it is.

I have described the ways in which I awoke to societal stigma, and how it has affected me since. But really, I was affected by a different kind of prejudice in a much more abusive way before I realized it was stigma that was causing it. I am speaking of stigma within the mental health professional community.

When I was admitted to my first hospital, I was in the middle of the longest-lasting psychotic break of my life, one that lasted, without abatement, for some four to five months. I needed the help of the mental health services, and once my parents took me to a therapist, I received it. I was treated with sympathy at that hospital, no one forcing me to take medication until I was ready to consent, the other patients and the staff alike kind and friendly with me. I was the subject of a few physical takedowns (which can be very hard on the body), mostly resulting from simple disobedience to direction, and these aren’t uncommon in hospitals. They are probably necessary as a final consequence to disobedience, in order to keep patients from absolutely refusing to do what they are told, and getting away with it. I did finally consent to medication, and within two months I was much better.

But this was a short-term hospital, and soon I was discharged to my father’s house. I was supposed to take the bus to the hospital every day for day treatment, but I had a hard time getting up in the morning because of the medication, and became apathetic. I missed a few days of day treatment. I began hanging out with my old friends, and even once smoked pot. Meanwhile, I was beginning to again become psychotic. My therapist, whom I trusted completely, decided I would have to be, at least for the time being, admitted to a longer-term facility. I agreed to go.

I won’t get into all my bad experiences at that long-term facility. Suffice it to say, as soon as I was admitted, my therapist, who had picked out the place for me, was not allowed to see me. I was never told why. There was no psychological therapy here. They simply had us go through our schedule day in, day out: up at seven or seven-thirty, lights out at nine-thirty or ten, laundry time, meal time, social time, nap time, TV time, exercise time, yard time, etc. What was the purpose of being there? How would this make me better? I did not even have what most psychologists call therapy when I met with the therapist they assigned me: she simply told me: follow the rules, don’t disobey anyone, do what I tell you, don’t disagree with me. I wanted my freedom. I wanted to discuss options other than being there. I wanted, at least, to prepare to be released to my father’s house; I wasn’t sure what needed to be done to make such a transition successful, but such plans were not discussed. If I obeyed everyone, and did not have to be punished, for at least a number of months, we could then discuss what to do after that. But they even punished us for saying "shit" in casual conversation. I thought all this was absurd. What had I done? Instead of obeying everyone, I kept running away again and again, sleeping in alleys until someone from the hospital found me, going to friend’s houses back in Aurora only to be caught by the police when I went back to my mother’s or father’s house to pick up some things.

My therapist was in charge of my entire program, when and if I would be released, what types of physical punishments the staff were supposed to give me and which ones they weren’t. (I am thankful to this day she never ordered that I be punished with leather restraints, which was a bed with leather cuffs for ankles and wrists, on which one is left restrained for varying numbers of hours. One fifteen-year-old girl there used to scratch scabs into her skin. Finally, her therapist ordered that every time she was found with a new scab, she was to be put in leather restraints for a certain number of hours.) I don’t pretend to know this therapist’s thoughts, but in my discussions with her, I got the impression her whole reason for speaking to me was to get me to agree to what she wanted for me. As for my opinion, it was always ignored; perhaps she thought my opinions were only results of psychosis; in any case she didn’t think they ought to be considered. This is an example of paternalism, prevalent in some sections of the psychiatric community, which says, "Schizophrenics cannot make decisions for themselves; we must make their decisions for them, and we are only protecting and aiding them in doing so." This kind of "protection and aid" is the philosophy behind straight jackets, frontal lobotomies, leather restraints, lifelong involuntary committals, and seclusion. Some mental health professionals persist in this paternalist philosophy, notwithstanding the fact that the medications now available make most schizophrenics capable of being active participants in their treatment, and able to make important life decisions to pursue a happiness of their choosing.

Perhaps you suspect I may have distorted the picture here, that I was actually out of control and needed to be controlled. After all, I admit I wouldn’t obey the rules in that hospital and was constantly being punished. I can only respond with the following explanation.

After a year of living at this place, for which the insurance I was on paid hundreds of dollars a day, I was worse than when I arrived. They had finally given up on me, and simply forced me to take about seventy milligrams of haloperidol (haldol) a day in an attempt to keep me from misbehaving. (This is a very high dose. When I was finally moved to California, my dose had to be lowered significantly to enable me to get on an airplane with my father.) The insurance company demanded I be moved to a different hospital. I was moved to one in West Los Angeles. I was a little apprehensive: would this hospital be better, or worse? There was no way to tell beforehand. When I got there, I found out it was better. Much better. I was to live in a house in the community, with "program specialists" or mental health workers there twenty-four hours a day. Weekdays we were driven to the hospital offices, where we had intensive group and one-on-one therapy. They weren’t trying to get us to behave. They were trying to find out what we wanted out of being there, and help us achieve it. There were no physical takedowns, not even if someone threatened to throw a chair. No one ever did. If someone got physically out of control, that person was merely discharged immediately and told not to return. The staff did not need the threat of physical takedowns to back them up if they got in an argument with one of the clients. We settled it like adults: we said angry things, and usually came to a resolution. One night I got into an argument and took off on my bike up the Pacific Coast Highway. I rode until I was exhausted. I came back around four in the morning. The program specialist I had been angry at hadn’t called the police and told them I had run away. I could have left any time I wanted. I didn’t want to leave. I was never punished for this.

I realized I had my freedom back, but now was the hard part: what to do with that freedom, how to make it successful. With this approach, I was living in my own apartment and attending Santa Monica College within nine months. I did not smoke pot or miss class. I was functional again. This, if anything, shows that the paternalist approach only leads schizophrenics to be dependent upon hospitals and dysfunctional, while a cooperative approach helps schizophrenics take control of their own lives; and if they are to live outside institutions, there is no other option but for them to be in control of their lives.

I mentioned earlier my schizophrenic roommate whose professor of psychology, in her eyes (I was not a witness), taught her class that schizophrenics were something less than human. I am glad this professor was in academics, and not working as a therapist or doctor in a hospital. I fear that the students she taught may go on to become therapists, psychiatrists, mental health workers, or hospital directors, without leaving behind the bigotry that had been taught them in that class. As long as we still have mental health professionals who are so prejudiced, we will not completely eliminate our historical legacy of punishing, rather than healing, the mentally ill.