Radicals change the world, and this part needs changing
Two themes emerged for me last weekend at the national conference of a group called Mind Freedom International. People diagnosed with schizophrenia have suffered more mistreatment by the mental health system than people diagnosed with major depression or bipolar disorder. And the creative new thinking about what’s next for the system is replacing psychiatric hospitals with small, voluntary therapeutic communities that allow people who experience a crisis to move around more freely, and get back to their normal lives faster. Even our modern state psychiatric hospital in Concord, which is as good, or better, than any in the country, makes people sicker before they start making them healthier, and takes away whatever autonomy they have left before starting to rebuild it. The traumatic, disempowering admission process itself does that. These smaller therapeutic communities would shortcut that, and free the hospital to concentrate only on people who are really an imminent danger to themselves or others.
For years, MFI has represented the angry, radical, sometimes confrontational wing of the mental health survivor movement. Most of them were victims of forced Medieval-style treatment and confinement in the bad old days of psychiatry, so their anger is understandable. I read all their material, and contributed a few dollars a year, because they gave me information I could not get anywhere else – about human rights abuses in the mental health system, and radical new ideas. MFI people have a long history of coming up with radical ideas that are now considered mainstream.
MFI’s rage is softening. This gives them more time to create new alternative systems, and to reach out to new partners with deep enough pockets and political clout to bring some of these ideas into existence.
Most of the people at the MFI conference had once been diagnosed schizophrenic, psychotic, or delusional, usually in their late teens or early 20s. They tend to be in their 40s and 50s now. I could have been diagnosed schizophrenic 30 years ago if I had told the doctors everything. Instead, I was diagnosed “manic depressive,” which we now call bipolar, and I had much better luck with the mental health system over the years than these folks did. Even 30 years ago, bipolar and major depression were easy to recognize, and we had medicines that, over time, treated the illness itself, not just the symptoms.
Everything we thought we knew about schizophrenia 30 years ago has been proven wrong. Hearing voices does not automatically mean you’re schizophrenic. Voices can come from previous traumas, bipolar disorder, depression, or a spiritual awakening that is not an illness at all. In many cultures voices are considered a spiritual gift or part of getting “saved.”
Anti-psychotic medicine does not make the voices go away. The best it can do is muffle the voices, and you only need to do that if the voices are keeping you from having a life. Those medicines have major side-effects, so each person with his doctor must calculate the benefits against the cost of the side effects. Thirty years ago, doctors thought schizophrenia was ALWAYS acute, always chronic, and always got worse over time. Federal studies that followed the same patients for 20 years or more have shown that only ONE THIRD of people with schizophrenia are very symptomatic practically all the time. Another third is symptomatic sometimes, with long periods of being OK in between. And the final third has one psychiatric event and never has another one at all.
But in the old days, when a doctor heard the word “voices,” he labeled you schizophrenic and snowed you with enough major tranquilizers to turn you into a zombie. Hospital staffs used to call those drugs “chemical restraints,” because they immobilized the patients so completely that straight jackets and padded cells were no longer necessary. That could have been my fate. It was the fate of many of the people at this conference. I wonder how many of them were really schizophrenic in the first place. I know they were all given either the wrong medicine, or more medicine than they needed.
In addition to the medical misdiagnosis and treatment, there was the psychological mistreatment. “I’m a mental health professional, and you have a diagnosis, so I’m OK and you’re sick. I don’t have to listen to you. You have to listen and do what I say. In fact, you shouldn’t even listen to yourself because, as a sick person, you can’t trust your own mind. If you don’t want to give your children to a guardian or foster parent, and I think you should, you’re wrong and resistant to treatment. If someone asked me to give up my children, I’d fight to the death, because I’m a good mother. If you fight to the death for your children, it proves you’re a bad patient.”
In many places – not so much New Hampshire – it still is the bad old days in the mental health system. Radicals change the world, and we need people like Mind Freedom International to challenge the old and help create the new.
