I found this report, From Privileges to Rights: People Labeled with with Psychiatric Disabilities Speak for Themselves, both valuable and troubling. The NCD held hearings in which they specifically listened to consumers of mental health services, and drew the following 10 conclusions, discussed below.
My initial reaction, I admit, was impatience. I’m inherently suspicious of activist language such as “people labeled with with psychiatric disabilities,” partly because I come from a profession that displays a naive faith in the power of such phrases to erase stigma. I spent much of my 20s playing language police — insisting that people who have been raped be called “survivors” and not “victims,” for example, or that we use the inelegant phrase “people with disabilities” instead of “disabled people” — and experience teaches me that such insistence needlessly intimidates people with no direct experience of rape or a given disability. Instead of asking direct questions and learning about mental illnesses, people tend to lapse into tongue-tied silence out of fear of transgressing some linguistic boundary. I’d rather create an atmosphere that encourages people to ask questions, even if their phrasing is flawed.
I’m also uncomfortable with the notion that I’ve simply been “labeled.” Of course, diseases are partly socially constructed. The treatment offered varies wildly from culture to culture, and these treatments are unquestionably more or less effective. In fact, I agree with the recent article in The New York Times that suggested that American ways of understanding and treating mental illness may create more stigma and suffering than they erase.
At the same time, the most disabling mental illnesses — schizophrenia, manic-depression and major depression — have been observed in most extant cultures since before the birth of Christ. I don’t think that these sicknesses are simply biological, but neither are they mere labels that would disappear if we stopped applying them. The very title of the NCD report riled me, then.
Next, I read the Executive Summary and core recommendations. Again, I found myself in immediate disagreement. The first recommendation begins, “Laws that allow the use of involuntary treatments such as forced drugging and inpatient and outpatient commitment should be viewed as inherently suspect, because they are incompatible with the principle of self-determination.” That’s a nice sentiment, I thought, but serious mental illnesses prey on judgment, will, and the ability to perceive reality. As I’ve said before in this space, the concept of self-determination may well not apply to us at all times.
Also, I worry that this insistence on self-determination feeds into the worst tendencies of American culture to offload citizens’ illnesses onto an already-weak family structure. David Karp’s The Burden of Sympathy, which I reviewed in this space, eloquently addresses the tragic consequences of this approach. We have, as a culture, abdicated responsibility for people who are ill, most notably by depriving them of quality, accessible medical care. This follows directly from our insistence on total independence and self-determination.
So, yeah, I found myself struggling with this report from the outset. Here’s the funny thing, though: When I read the actual testimony, I began to waver. Here are the words of one former patient:
The unit structure is based on privileges and punishments, which are referred to as consequences, since they maintain these are not punitive. [The structure] will not allow any kind of privacy whatsoever, and everything is a potential treatment issue, including nail-biting and not making one’s bed. They maintain control through humiliation and fear of humiliation.
Too true. These aspects of psychiatric hospitalization are undeniable, maddening and unnecessary. I’ve never been restrained or forcibly medicated, but I’ve often seen it happen in totally inappropriate circumstances, both in the snake pit of a public hospital and in exclusive private settings. Nurses and aides pathologize perfectly natural and even healthy behavior. A trivial example: a nurse once recorded the following in my chart: “Patient engaged in writing behavior.” God forbid you should express healthy, righteous anger. A less trivial example: When I refused to eat meat (I was a vegetarian), a nurse threatened to “ram a feeding tube up [my] nose.” In fact, when I’ve been subjected to forced treatment, it has never benefited me, and has often done significant harm.
Even so, a part of me thinks, “Yes, but some people refuse treatments that they need, and they are in no condition to give informed consent.” For instance, I remember a young woman in a public hospital who became floridly psychotic and posed a danger to other patients. I was grateful when they restrained and medicated her, and I think it was necessary.
Along these lines, I’ve noticed that no one who lands in a mental hospital thinks they belong there. Absurdly, each patient thinks that her case is an outrageous mistake, and that she doesn’t belong in the company of this pack of nuts. In other words, we can see each others’ pathology clearly, but we typically have very little insight into our own.
In the end, though, I return to the core of my own experience. Coerced treatment has never helped me, and I’m not sure that it benefits anyone else, either. I think back on my first hospitalization, which was at a swanky clinic for women with addictions and eating disorders. I had neither, but my shrink persuaded me that “they know how to feed people.” You could say that. The young anorexic who shared my room was very, very ill — she envied my weight, which was an unenviable 92 lbs at 5’6″. The staff’s approach? At each meal, a nurse was assigned to watch us and record what we ate. Patients were then forced to wait in public for two hours so that they wouldn’t purge. Can anyone seriously argue that someone with an eating disorder would benefit from this treatment? If anything, it was fiendishly designed to drive her deeper into rebellious self-starvation, and to reinforce her fear of food.
These musings lead me to the following conclusion: Forced treatment can be a good idea in principle, but in fact it rarely works as intended. Instead, it encourages nurses and aides to abuse the absolute power they enjoy over patients. Psych aides, in particular, are poorly paid and usually receive no special training. They act out of prejudice, fear, and, yes, a perfectly human desire to punish and control “bad” patients. Restraints, forced medication, and solitary confinement make their jobs easier, and prejudice allows then to justify mistreatment of patients.
(Incidentally, I do feel sympathy for psych aides — their working conditions suck, and despite this, some treat patients with genuinely healing compassion.)
Well, it’s time to get ready for work, and I’m still on the first recommendation. I’ll return to this report later.
Love to all.