by Bill Weiner
I must be crazy. I’m one of those social worker types, and the folks I run into just aren’t doing so hot: the old and young ones, the sick, the maimed, the slow and the crazy ones. Maniacs, the demented, depressives. obsessive-compulsives, schizophrenics, and their families – these are the ones I work with (at times against) the most. I know it’s not nice to call them crazy, but that’s what we mental health professionals do. Not necessarily in a mean or nasty way, just in a matter of fact if the shoe fits wear it kind of way. Psychotic is too clinical and sounds kind of scary. Schizophrenic has too many syllables. Bi-polar, too wishy-washy. Manic-depressive (the old term for bi-polar) is too stuffy and cumbersome. Crazy is just about right and is the sobriquet of choice.
Psychiatrists, nurses, social workers, clinicians and case mangers, with ever-growing caseloads and case notes, call them crazy, though not to their faces (well, not often), and certainly not in print. Nevertheless, in the parlance, crazy – or fucking crazy – is the term most frequently employed. In conversation among professionals – polite or otherwise – you seldom hear the words ‘mentally ill” or “handicapped”0r “challenged” or “cognitively impaired.” The word “lunatic” is never heard, though the full moon remains a popular topic of discourse. Cops seem to prefer “mentals,” for some reason.
When times are tough everybody suffers, right? The poor and the vulnerable a little more than the rest. That’s the way it goes. Things seem to be bad and getting worse for the poor and vulnerable. A lot worse.
It’s Only a Paper Moon
Schizophrenia is characterized by withdrawal from reality. Symptoms include: ¥ Delusions: believing things to be true which have no basis in reality. For example, you could have delusions of grandeur, poverty, or persecution – the CIA is spying on you. Now we all know the CIA doesn’t engage in domestic espionage. ¥ Hallucinations: in most cases auditory (hearing voices speaking to you or about you) .They may be command hallucinations (telling you to do things like cut your wrists or drink bleach). ¥ Ideas of reference: the TV is broadcasting encrypted messages, which have special significance or relevance only to you. ¥ Formal thought disorder: disorganized, illogical modes of thought and speech, such as losing associations, word salad. Other symptoms can include magical thinking, obsessive sexual or religious preoccupation, blunting of emotions, and varying degrees of social withdrawal and isolation, lack of motivation and self-care. Stuff like that. Historically, schizophrenia has been attributed to a lot of things, from imbalances of bile and phlegm in the brain, to the moon, to demons, to schizophrenigenic mothers who impart mixed messages to their progeny, to myth. These days it’s genes. Psychiatrists usually tell patients and family members (if they tell them anything at all) that it’s caused by a chemical unbalance in the brain. This is the best modern medicine has come up with so far.
Things have never been easy for schizophrenics. Psychiatry has had a dubious history. As we approach the millennium, we have become a little more enlightened, though, and institutional abuse is on the decline (as are the institutions themselves). We don’t chain them to walls, beat them, bleed them, or give them ice cold baths (“hydrotherapy”) or make them have convulsions (“insulin coma therapy”) or lobotomize them any more. As a matter of fact, we don’t talk to them (“psychotherapy”) all that much anymore. Since we recognized that schizophrenics have the same civil rights as we regular or normal people do, we have deinstitutionalized them. Some of them even vote. We bend over backward for crazy people. Americans are a generous people. We tell ourselves this all the time. Probably, it was Tocqueville who said it first. And it’s true. We give them money and provide community-based mental health centers, short-term care facilities, partial-care programs, boarding homes, etc. So how come schizophrenics are still doing badly?
Not a Pretty Picture
Maybe it’s their fault. They just don’t do what they are supposed to do. They’re non-compliant. They don’t take their medicine or keep their appointments with mental health professionals. They’re not crazy, they just don’t like to follow the rules. They don’t obey their parents or listen to husbands or wives, who’ve had it up to here. No, they don’t listen to anybody. I guess they’re just too gosh darn busy listening to those silly voices in their heads . .. and muttering and talking trash and screaming at passersby and hanging out in the streets and parks and train stations and bus depots and abandoned buildings and Burger Kings and Dunkin’ Donuts and Dumpsters – refugees from nowhere, scrounging and wheeling shopping carts and baby strollers filled with black plastic garbage bags containing their life savings and half-eaten sandwiches . . . loitering in doorways, downing 16-ounce cans of malt liquor or cheap wine or smoking crack cocaine and spliffs and blunts, or just drinking in the scenery, obeying no one and baying at the moon.
Some never go out. They are shadows holed up in dank, windowless rooms day and night, night and day, in dirty underwear that is unchanged, and they refuse to take advice and baths, so they stink . . . and they talk incessantly to themselves or to God or to the Devil, and snicker and snigger and giggle to themselves, and overhear others talking about them and laughing up their sleeves and behind their backs . . . and get secret messages from radio static or static electricity . . . and pace back and forth, back and forth, and argue with the incessant and merciless voices and chain smoke cigarettes and leave cigarette butts smoldering in unemptied ashtrays or burning holes in sheetless mattresses stained with saliva. Mary worries about how she can help John today and who will care for him when she’s semen, or menses, and reeking of sweat and urine … and eat nothing for days on end, and grow thin and gaunt and pale in the dark . . . and get holy-ghost religion and read the Bible furiously, for mercy and forgiveness . . . hallelujah.
Eventually, somehow or other they wind up in psychiatric wards, where they will be stabilized and discharged with side effects and good intentions, prescriptions and disposition plans. Inpatients, outpatients. In and out. The cycle begins anew.
A Few Grim Statistics
The National Institute of Mental Heath reports that 1.5% of the U.S. adult population are diagnosed with schizophrenia. More than 2 million Americans are affected by schizophrenia in any given year. Schizophrenia costs the nation some $30 billion annually for treatment, social services and disability payments, lost productivity and premature mortality. An estimated 10% of schizophrenics die by suicide: their suicide rate is 16 times that of the general population. Up to 30% of schizophrenics are treatment-resistant: Their symptoms are not controlled by medication, or they must stop drug therapy due to adverse side effects. The NIMH also reports that the funding provided for mental health research in the U.S. amounts to less than 1% of the yearly cost of mental illnesses. Eight percent of hospital beds are occupied by people with schizophrenia, more than by people with any other medical condition. The National Coalition for the Homeless cites studies showing that 2<) to 25% of the homeless population suffers from some form of severe and persistent mental illness. In 1992 the Federal Task Force on Homelessness and Severe Mental Illness reported that 5 to 7% of homeless persons with mental illness need to be institutionalized. The others could live in the community if they had access to appropriate supportive housing and services.
A study of the history of sexual and physical assault on homeless females who are mentally ill, published in the American Journal of Orthopsychiatry, indicated that their lifetime risk for violent victimization was 97%. The New York Times recently reported that today, one in ten people with mental illness wind up in jails and prisons. It’s a lot cheaper than hospitalization. Would it be less expensive to provide the community services that were once promised? Decent housing, for example? Who knows? A place to live, a little thing like that, might keep some of them out of mischief.
Institutionalization vs. Deinstitutionalization
Is deinstitutionalization to blame for this mess, or is it the lesser of two evils? Cost benefit analyses consistently show that, dollar for dollar, it is by far the cheaper. Forty-three percent cheaper. And the bottom line is the bottom line. What about the social cost, the cost in human suffering? Tsk, tsk. It’s too bad, but that simply cannot be quantified. So let’s ignore that question. As it is, keeping crazy people in the community is still no bargain. Short-term in-patient hospitalization alone costs $1,000 a day. It would be cheaper to send them to a five-star hotel or on a cruise or to a resort – Disney World or Vegas. And what do they get for all that money? A few activities, a personal hygiene group, stuff like that; a day room with a TV set; access to a shrink for maybe 10 minutes a day if they’re lucky, and a little medicine. The opportunity to share a room with another crazy person, who may be a whole lot crazier.
Absurd? The institutionalization vs. deinstitutionalization argument is more absurd. We might as well spend our time arguing over how many angels can dance on the head of a pin. As for protecting civil liberties vs. locking the door and throwing away the key, there is no need for argument. Crazy people should enjoy the same rights and privileges, and be as safe in the real world, as regular people. The vast majority are non-violent and law abiding. They do the best they can even in the worst of circumstances. In the daily struggle for survival, most are heroic. Some lead very rich and productive lives despite this devastating illness. Life is hard enough if you are normal. People are always playing tricks on you and you need a brain in reasonably good working order to try and figure out what is really going on. What if your own brain were playing tricks on you?
A lot of crazy people, even under the best of circumstances, are just not capable or are prevented from enjoying these rights and privileges. In spite of new and improved drugs there are still those who respond poorly to medication, others who cannot tolerate the side effects. Some are in denial and refuse to take medication. Others too paranoid … or wise to trust their doctor. Lack of adequate community mental heath services leads to overcrowded and understaffed clinics. Too often medications are misprescribed. Wealth does not guarantee access to the best available treatment.Two or three hospitalizations may exhaust a family’s resources, and mental heath insurance coverage for life. I’ve witnessed numerous instances of people from affluent families who wind up on the streets.
At times, they may become dangerous, or abuse the rights and privileges of others. How do you determine each one’s capability? That’s a tough question to answer, and many factors must be carefully weighed. When regular, normal people abuse these rights and privileges, they go to jail. If they don’t learn their lesson, and continue to do the same bad things over and over again, they are called repeat offenders and sent back to jail with longer sentences. Prisons are a growth industry these days.
When some crazy people’s brains are on the fritz and they repeatedly dance on the rights and privileges of others, they are involuntarily hospitalized. In most cases, whether it be the third or thirtieth time, they are put away for a week or two or three and then released into the community to trip the light fantastic once again.
Long-term hospitalization (institutionalization) is not the answer, and should only be considered a last resort. The first criterion needed to determine the necessity of long-term hospitalization is the individual’s ability to function in the community without repeatedly becoming a danger to himself or herself or others. He or she must be able to demonstrate minimal self-care (survival) skills over time. At some point, after repeated short term hospitalizations for suicide attempts, threats against or assaults on others, or a demonstrated inability to care for oneself resulting in serious harm, long-term, or, in some cases, permanent, hospitalization is justified. It all sounds so simple, so sensible. All that’s needed is to figure out a way to pay for it. That shouldn’t be too difficult. I don’t know, maybe it’s me. It must be. I must be fucking crazy.
Bill Weiner is a New Jersey freelance writer, and long-time social worker specializing in psychiatric crisis management.