KQED | Hope on the Street : Public Policy Corner

Bringing Mental Illness, Hope and Recovery to Capitol Hill:An Interview With New Freedom Commissioner Dan Fisher
Dr. Dan Fisher is the only former mental health consumer on the President's New Freedom Commission on Mental Health. He is one of the few psychiatrists in the country who openly discusses his recovery from schizophrenia. The board-certified psychiatrist completed his residency at Harvard Medical School and presently practices at Eastern Middlesex Outpatient Center/Riverside. He is also co-director of the consumer-run National Empowerment Center. KQED.org spoke with the national advocate and veteran of the consumer movement about his work on the historic New Freedom Commission and beyond.

Q: The last time a commission was convened by executive order to study mental health was during President Jimmy Carter's administration. What's the significance of the New Freedom Commission on Mental Health and your appointment to the commission?

Any time there is an opportunity to have dialogue about these issues and have them on a national issue, I think that is potentially helpful. It's interesting you mention the previous commission, because Mrs. Carter came and spoke to us at a dinner, and she talked about the commission she had convened. To me, one of the most interesting things she said was that they didn't know people could recover from mental illness. If they had known that then, she said, they would have had a different commission, covered different topics, and they would have had more participation from consumers and survivors.

I think (the Carter commission) had one person who was identified as the user or recipient of services, but that person was not really part of the consumer movement. Although in this commission we certainly would've liked to have had more than just me identified as a consumer/survivor and having had history and experience working in the movement, it was at least a step to have one of us there. That meant I was able to bring more people in to give testimony. And I think I've done a fair amount of educating my fellow commissioners to the topic of recovery -- that was new to many of them as well.

Q: How do you define "recovery"?

I think there are two major views of recovery at this point in time. There's sort of what I call the perpetual view of recovery -- which is that people are always recovering. They can become functional, but they are still mentally ill, so they will always probably have to have perpetual support, always have to have medication, always remain labeled mentally ill by themselves and others.

Our view of recovery, which I think is more of the consumer/survivor view of recovery, is that people eventually do recover. So it isn't just functioning, it's overcoming, really becoming like other people. And then if you are upset or you get very emotional, that's because it's part of being human.

Q: Why is it so important to you to impart this concept of recovery to the New Freedom Commission as it considers policy changes?

Many of us in the consumer and survivor movement have placed recovery as a central, philosophical theme of our work. Professionally directed or professional philosophies of care always emphasize what people are doing to treat other people. They never can get at what we feel is the most central issue: that is, how people actually go about their own recovery -- something that each person ultimately does through their own activities, their own way. It's individualized, it has to do with empowerment, self-determination, having a voice and having hope.

We feel recovery is so important because the whole structure of the mental health system, the philosophy of it, the structure of it, the services of it, are quite, quite, quite different if you approach these problems -- even the most severe problems, like schizophrenia -- as problems that people can actually recover from.

In my own life, part of my recovery was getting over the idea that someone was going to fix me. I had to get over the idea that there was a technological or psychological technique that was in the hands of the professionals and that they were going to manipulate my life in some way. That sort of industrial approach to mental illness, I think, is part of the problem -- if you give up too much control over your own life and are not able to follow your dreams, put them in the hands of experts, I think that is the basis of mental illness.

I run into this in my work. One day a week, I work as a psychiatrist. And I see the pressures -- and they are brought to bear on me to be an authoritarian in people's lives. And when people's lives aren't doing well, they need guidance. I don't deny that, but it should be temporary. They should be given the tools (enables them to) control their own lives.

Q: Bringing your experience as a former consumer and survivor, what are the other leading issues you've brought to the attention of the commission?

Rights is a big one, in addition to recovery. The issue of rights in mental health is a very conflicted area because by definition when you are labeled with mental illness, certain rights you lose automatically. You can lose the right to custody of your children, the right to information about you, fair representation in court -- your own testimony has become suspect. So there are a lot of rights that we very much want to be sure are protected. The government does fund a protection and advocacy function for each state, but they are quite understaffed and underfunded. So we will have policy recommendations around that area to try to improve the protection of our rights.

Q: What do you expect will come of the commission's final recommendations?

I think it is going to be up to the advocates. We'll probably use it the way we used the [1999] Surgeon General report ["Mental Health: A Report of the Surgeon General"], which is very selective. You find quotes, you go to a meeting and you say, "Here it is, page such-and-such of the White House commission on mental health says this is an important thing, you should have consumers involved in this meeting." It can become an advocacy tool for astute advocates.

Q: Tell me about your work with the National Empowerment Center.

We started the center in 1992 because we felt the voice of consumer/survivors needed to be heard. We felt there was a big disconnect between our own experience of recovery and what we saw professionals and other stakeholders saying was our life experience. We were started by and continue to be run by people who have recovered from mental illness, like myself. And we tell our stories: We go and do conferences and workshops. We've developed a training program, Personal Assistance and Community Existence, PACE, which we feel encompasses the principals of recovery. We've actually done a research study on the impact of that curriculum on different providers and provider organizations and found that it significantly increases people's hope -- both people who went through the experience and people using it. We want to expand on it.

Our goal is to really transform the cultural perspective on these problems -- not just in the mental health system, but in society at large. We feel the bottom line is more education. Until society at large sees that this is a human problem, that we are human beings, and sees that we can live a life just like they can live a life, and we have the same aspirations and dreams, and we are not ax murderers any more than people who are not labeled with mental illness, we will continue to be marginalized, discriminated against and not funded, and be denied jobs and housing.

In some ways there is nothing more insidious than the discrimination and stigma (against mental health consumers). It's really beyond stigma. Even that word is a problem for us because the only time discrimination or prejudice is (replaced) with the word "stigma" is with people with mental illness. And that becomes itself stigmatizing. So "discrimination" and "prejudice" we like to emphasize because those are terms that any marginalized group has to face.

Q: With the country so consumed with war, homeland security and economic recession, are you concerned that mental health will get lost as a national priority?

It's already happening. Our funding [at the National Empowerment Center] was threatened last year. It was ironic, contradictory and infuriating that the very time I was on the commission, the government was saying, "You're maybe not going to be funded" -- definitely a double message. Largely through education efforts on (Capitol) Hill, we got the funding restored at least for a year.

But I think it's not so much because of the greater environment as because of what we say. Our particular message is particularly under criticism. Because we're living in such an uncertain time, there's more emphasis on top-down approaches across the board. And our approach is obviously more bottom up -- every person has their own voice.

I think a lot of social programs are going to be at risk for the coming year. They'll be especially at risk if we go to war. But even if we don't, I think there's just not large support for mental health. And that's probably going to lead to more mental health problems. But it isn't going to stop what we do. This is my life mission.

--Interview conducted by Kelly Whalen.

To learn more about Dr. Fisher's personal story, his approach to mental health and a critique of the pharmaceutical industry, read his opinion piece published in The Washington Post, August 19, 2001.

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