A talk with Judi Chamberlin
Facing death, a plea for the dignity of psychiatric patients
"NOTHING ABOUT US Without Us."
That is the motto of a grass-roots movement that has carried various names over the last generation, but has always revolved around a single principle: self-determination for people diagnosed with mental illness. Call them psychiatric patients or consumers or survivors, they are fighting together to gain more control over their treatment, and more say in the mental health system overall. And they have won some striking successes in recent years, gaining more input into official policy and creating new jobs for people who, 12-step-style, have recovered from the worst of their illness and now want to help others in crisis.
The mother of that movement, many people would say, is Judi Chamberlin of Arlington.
Chamberlin was hospitalized against her will for depression in 1966, and shocked by how she was treated. Her seminal book, "On Our Own: Patient-Controlled Alternatives to the Mental Health System," came out in 1978, and became a manifesto for the movement. Chamberlin's activism for patients' rights spanned the next 31 years, and evolved with the history of mental health treatment in this country.
At first, in a system that relied heavily on state hospitals, she focused largely on protecting inpatients' basic rights. As "deinstitutionalization" took hold and the hospitals emptied, she focused more on outpatients' needs for services and dignity as well. She also joined forces with activists for people with physical disabilities, and extended her reach internationally, helping push a treaty on disability rights that the United Nations passed in 2006.
Now, at 64, Chamberlin is dying. She has entered hospice care for chronic obstructive pulmonary disease, an incurable lung disease. (It is most commonly caused by cigarettes, but Chamberlin never smoked.) Largely confined to bed, Chamberlin relies on an oxygen mask and works when she feels well enough, including a blog chronicling her experience at judi-lifeasahospicepatient.blogspot.com. Her partner, Marty Federman, figures heroically in the blog, as well as a broad circle of friends, admirers and helpers. True to form, Chamberlin is using her final experience as a patient to argue for reform: The hospice system, she says, with all the autonomy and respect it gives dying people, could serve as a model for psychiatric care.
IDEAS: Psychiatric illnesses can and sometimes do disrupt things like a person's judgment, their perception of reality, their ability to think clearly. So couldn't that possibly, at least sometimes, justify coercion?
CHAMBERLIN: I think the only justification for coercion is where there's actual dangerous, violent or criminal acts. Because we let people do weird, possibly self-destructive things all the time - smoking, drinking, jumping out of airplanes. You go into the mental health system and it sucks you in, and a lot of people who've been in it in the past are willing to suffer rather than go in again.
IDEAS: What was the experience with the mental health system that got you going?
CHAMBERLIN: I originally went voluntarily. I was extremely depressed, and I thought I'd get some help. And after a couple of voluntary hospitalizations, I was sent to state hospital involuntarily and that's when I really realized, "Hey wait a minute, something is very, very wrong here."
IDEAS: And from that experience came . . .
CHAMBERLIN: . . . the fundamental conviction that there's something really wrong here and it needs to be addressed by people who've been through this experience. And of course, this was the '60s - the civil rights movement was underway, the women's movement, the gay liberation movement. And it just seemed to me that we needed that kind of movement for people with our issues.
IDEAS: I'd have to say that women's liberation and gay liberation and civil rights have probably moved a lot farther and are a lot more recognized as legitimate. Why, do you think?
CHAMBERLIN: I think there's still a tremendous amount of social stigma. I think there's a reluctance on the part of people who've had a psychiatric past but have become successful in life to identify themselves publicly because there's no upside to it, there's only a downside, and there are certainly some people who are fairly well known and successful who have, but a lot more who are wanting very much to stay in the closet.
IDEAS: What has been your movement's greatest failure?
CHAMBERLIN: The greatest failure is that we're not seen as an organized group that can speak for ourselves. Lots of times you read an article about disabilities and have someone with cerebral palsy speaking about cerebral palsy or somebody blind talking about being blind, and then you have a family member talking about what it's like to be mentally ill and the interviewer seem to think that's the same thing, but it's not.
IDEAS: What would you highlight as the issue that still most needs to be taken on in our societal life?
CHAMBERLIN: The issue of mental illness and violence. It's so linked together in people's minds and it so distorts what most people with psychiatric disabilities are like. Because while the research shows over and over again that people with psychiatric diagnoses are not more violent than anybody else, that's not what people believe, and it's hammered in all the time with crime shows - that this is what people with psychiatric disabilities are like: They're unpredictably violent in a way that justifies all this forced treatment.
IDEAS: What do you think people need? You've talked in the past about alternative services - mental health services offered noncoercively, often run by people who've been through the experience of psychiatric illness, so they're built on a self-help model.
CHAMBERLIN: When people are in emotional distress and they're asking for help, and a lot of people are - they say "This is awful, I'm in hell" - we want to make sure that help is provided in a way that meets people's self-defined needs. And one thing that's useful is the equivalent of a living will document. "When you see me doing this, try this or don't try this. Because I know from past experience this makes me feel good and this makes me feel horrible."
IDEAS: And you see a parallel between that kind of patient self-determination and hospice care?
CHAMBERLIN: The hospice model puts the patient in the center. What matters is what the patient wants. And then the various people who are the staff - the nurses and social workers and others - are there to support their choices. They're not there to impose their ideas.
IDEAS: I guess the difference may be that hospice amounts to an agreement that the traditional medical system has little left to offer you, whereas in psychiatric treatment, sometimes a clinician might think medicine has a lot to offer while the patient may disagree.
CHAMBERLIN: Right, but again, I think this is the choice part. A lot of people have used psychiatric drugs in ways that have benefited their lives and made the trade-off on some of the side effects because the overall balance is positive. But other people have said, "This drug doesn't work for me." . . . There's a jokey definition of mental illness as doing the same thing 10 times and expecting a different result. I think that can apply to doctors who push the same drug when 10 times it's failed.
Carey Goldberg covers brain science and mental health for the Globe.