I've just finished reading The Center Cannot Hold, by Elyn Saks, and I'm most of the way through The Day the Voices Stopped, by Ken Steele and Claire Berman. Both of these books (highly worth reading) describe their authors' experiences struggling with schizophrenia. I also attended a talk by Prof. Saks in which she spoke about her experiences.
For a while, as long as I've known about the way mental health is treated by insurers and policymakers compared to physical health, I've thought mental health parity is something good, something we need. But (as the title says) it just isn't enough if we want to have a working system.
I have a relative, either of the first or second degree (I'm not sure how to characterize him) who is a... "consumer." I don't like that term, it sounds too much like the market model of everything, but it's the standard term. So I'll use it.
He's a consumer. He's had some rough experiences in care or custody, as well as out of them. Some of them were acts by others, some of them were his own acts or thoughts... needless to say, he has suffered.
You know, one of the things that Professor Saks said, again and again, in her talk (and in the book) is the importance of letting people keep some of their dignity. Steele makes the same point. (This is actually hard to type: while Steele is not an uncommon name, it is my consumer relative's surname.) Being physically restrained, medicated either by physical force or by force of law, being confined to a ward, and just being forced to wear one of those unbelievable hospital gowns, the ones that leave your butt hanging in the breeze... those are degrading. Hell, the hospital gowns are degrading even if you're not being crushed by anxiety and paranoia. I ended up in a hospital with a Staph.-induced fever a few years ago. I hated how the gowns always made me feel more naked than being actually naked, so I wore shorts underneath. (Try this if you end up in a hospital yourself, you might feel more comfortable - though YMMV.)
Both of them make a second point: the culture of the USA, to some degree, treats health as a mind-over-matter issue. Obviously if something's actually broken (a leg, for example) that has to be set, but once the organic, mechanical problem is fixed, it's just a matter of having the willpower to keep up the proper regimen, like good diet, exercise and PT, and so on. Saks makes it explicit: if it's mind-over-matter, she says, what hope do those with sick minds have?
This cultural artifact is sort of interesting by itself, but even more so when you compare it to the best-practices understanding of how to treat serious mental illness. Sure, medication has its role to play. But one of the big things is allowing and encouraging consumers to find something to do that is satisfying to them, that is challenging, that they like to do. For Saks, who may be exceptional, that was law school - at first as a student, then later as a professor. For Steele, that was... a variety of things, actually, ranging from working with physically disabled consumers, to cooking, to community organizing (woo!). Yet too often these authors, and my kinsman, found no opportunity for that. For someone who once loved singing in a chorus, taking and developing his own photographs, working for a university newspaper, and so on, stuffing envelopes is not going to be conducive to any kind of recovery, you know?
And lastly, there's what I would call the Insane Places problem. It gets its title from David Rosenhan's wonderful article, "On Being Sane in Insane Places", in which volunteers working for him pretended to experience mild psychiatric symptoms in order to be admitted to psychiatric hospital wards. There, they observed that every one of their actions was labeled by the staff as a symptom, or as evidence, of their craziness. All "pseudopatients" took notes on his experience; this was labeled pathological "writing behavior". Another, who kept his legs from getting stiff by walking around the ward, was assumed to be "nervous" by the staff.
These were people who were, by most standards, quite sane. If we were to speak of someone who was admitted to a ward while expressing psychotic thinking, how much more so would he thereafter be regarded as insane?! Keep in mind that having a diagnosis of a serious psychiatric disorider is somewhat akin to having it branded on your forehead: it has a tendency to follow you around and affect the way people react to you. But at the same time, people who have been committed at some time have legitimate issues they need to call attention to. Like sleep apnea - Steele's concerns about repeatedly waking up in the night, gasping for breath, falling over, and waking unrested were dismissed as manifestations of his psychosis, or side effects of absolutely necessary treatment; in either case, to be ignored. Like a stroke: Prof. Saks was hauled to an ER by a friend who found her confused, barely able to speak, with a splitting headache and no short-term memory. These symptoms, too, were dismissed, until her friend argued into having her seen not by a psychiatrist but by a neurologist (who immediately said, She may have had a stroke, let's see what her spinal fluid is like... oh, it's full of blood? Yeah, let's treat that, immediately). The assumption is, since people with a diagnosis are crazy, if they report symptoms, don't assume there's more going on than what's already staring you in the face. If you hear hooves, generally you assume horses instead of zebras, right? And I suspect a lot of complaints about the side-effects of the drugs used to treat severe mental illness are dismissed in a similar way - either "If you complain about side effects it's clear you don't know what's good for you", or "This drug doesn't have those side effects; what you're experiencing is the effects of your illness."
And all that doesn't even touch the issue of abuse of consumers by the clinicians tasked with caring for them, ranging from mere beatings to rape, which is probably mercifully uncommon, but not at all unheard of either.
So for the sake of having not only parity, in the health policy sense, but actual equality, these things will have to change. We need to treat consumers as human beings, not as diagnoses and symptoms with names attached. And seriously, this is shameful. What was the phrase? "These were the sins of your sister, Sodom: she had pride, peace and luxury but did not extend her hand to the needy", something like that? Or maybe it was "As you have done unto the least of my kin, you have done unto me"?
Edit: By way of clarification, since copithorne pointed it out, this diary meanders a bit. My main point is this: parity legislation is important, but the way psychiatry is practiced also needs to change for the mental health system to really improve.