We Need a Voice, But Whose Voice?

A few of you have recently commented that the mentally ill have no voice and that we desperately need one. That's something I've been saying for a while myself. Someone also wrote that we need a spokesperson. We might need a few of those, too.

For what they are worth, my thoughts:

Often, in America the voice for social change comes from a charismatic individual, or individuals, who is tied in with an advocacy group that works to make its voice heard in non-traditional ways. This was true of the civil rights movement (MLK there, principally) and of the conservative, economic-reform movement (Reagan). The pattern didn't hold as tightly for the gay rights movement (Larry Kramer was a force, but far from the central figure) nor for the women's rights movement (so many women played key roles). For the social conservative movement (this is separate from the Reagan Revolution, which had more to do with economics and smashing Communism than anything on the moral-religious index), there were also many rainmakers. That's some simplistic background.

So what about us? The two large advocacy groups in the US (NAMI and NMHA) are not the bodies through whom the type of change we want is going to happen. They are too focused on national and state-level policy and politics to have any ability to shake up American culture. They are insiders without charismatic central figures. Also, both groups are too dependent on funding from sources that just wouldn't appreciate the kind of pushiness that may need to go down in order that our voice be heard. Many in the mental health community believe that NAMI is too dependent on pharma contributions, for example. (NAMI claims that the amount is much smaller than it used to be.)

My guess is that we'll eventually end up with several key figures. The media--and let's face it, the media is often the kingmaker in these deals--is far too diffuse these days for any one person to be "the hero," as it were. That's a good thing. The issues around mental illness cross so many lines in our culture that it wouldn't be possible for one person to get a grip on addressing all of them with genuine impact. And we need impact and results, not just consciousness raising and getting the rich and powerful to say nice things about the mentally ill. We need the real thing.

The trouble is that our time hasn't come yet for the change agents to be in a position to have results. But we are getting damn close to that time. Still, there are signs that America remains hesitant to change its thinking around mental illness in the expansive way in which it must. There have been several best selling books on mental illness over the past 15 years--Darkness Visible, An Unquiet Mind, Prozac Nation and Listening to Prozac. (There are a few others, of course.) These are all good books, but they are largely restricted to memoirish affairs (message: mental illness is fucked up, I have mental illness and am fucked-up, but the meds work fine, so take meds) and clinically-based accounts (message: science says mental illness is a brain problem, meds address the brain problem, so take meds). They are not instruments of social change, nor do any of the authors really see that as their goal, and, as a result, none of them did, or do, much for the mentally ill. That's ok. Kay Jamison's work has, over the years, made me feel a hell of a lot better about my own fate.

I mention all of that because several of those authors have been referred to as "our voice" by some people. Anyone who has ever seen Jamison on television knows why she'll never be our voice. She's a psych doc and her concerns are very doctorly, not social change. This past spring, I was in Washington, D.C. when NMHA officials spent much effort trying to convince Jane Pauley--who outed herself as being bipolar on her tv show a a year ago--to become a major spokeswoman for mental illness causes. She declined. Many in our "movement" pine for some famous celebrity to come forth and make the sick walk again. I think going the Hollywood/celeb route is a terrible idea for two reasons: one, it's been tried and failed. Last year, one of the pharma companies sent Terry Bradshaw (the great quarterback) on a media tour in several major cities to discuss depression and men and how getting treatment was a cool deal. I got one of the press releases, but, as a reporter, I couldn't see much of a story there. Neither could the rest of the media, which didn't cover his visit to Seattle. His visits elsewhere didn't generate many press notices either. Working in the media myself, I can assure you that anytime a celeb wants to talk to the media about an issue of any kind, we tend to roll our eyes and pass--it's largely a play for publicity by a figure already well-known. Why give them more ink?

What's more, the general public tends to blow off the celeb spokesperson--unless they are talking about acting or football!--because what they are saying about themselves ("Hi, I'm Terry Bradshaw and I'm depressed.") doesn't register because we already know these people. What we are getting now is just a slightly new wrinkle on their lives, and the whole thing reeks of corporate PR manipulation anyway. The only time where I have seen this approach work in a powerful way was with Lance Armstrong, a man I truly admire. But keep in mind that Lance had been doing his cancer advocacy work for more than five years before the Livestrong business blew up this year. Also, it got the most attention when he was at the peak of his sports career, not years after he had left the limelight.

Social change is dicey stuff. It requires an outsider figure. I am not sure who those people will be for us. But I am certain they will not be a celeb and they will not be someone speaking on behalf of Eli Lilly or any other pharma company. And this is as it should be.

So why, as I mentioned earlier, do I think our time hasn't come yet? You may remember John Nash, central figure in the movie A Beautiful Mind. The man was/is profoundly schizophrenic and still won a Nobel Prize. I cannot think of many more profound examples of just how well people can do with mental illness. When the film came out four years ago, I expected Nash to become one of our great public voices. But that didn't happen.

So, we're still looking. Anyone have any ideas?