NAMI doesn’t speak for me

I also posted this as a forum topic on the NAMI group on Facebook.

According to its website (, “NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to improving the lives of individuals and families affected by mental illness.”

I have bipolar. That distinguishes me from most of the people I’ve encountered in NAMI–most don’t have a diagnosis themselves, at least not in my experience. Rather, they tend to be “normal” people who get involved after a friend or family member is diagnosed.

I feel that this is intrinsically problematic, especially as it’s reflected in the attitude that NAMI takes. Take the slogan on this group’s homepage, for instance–“Mental Disorders are Brain Disorders.” This strikes me as an incredibly reductionist and hugely worrying approach. It assumes that “mental illness” (I myself prefer the term “madness”) is simply a deviance, not merely from social normative patterns of thought and behavior, but from the mad person’s own, supposedly authentic, personality.

In my experience, that’s not true. In my own case, while bipolar is, very often, hell, it’s also a fundamental part of my personality, and influences me in ways going far beyond the collection of symptoms listed in the DSM. Madness, unlike physical illness, isn’t merely a deviation from the system’s normal workings–it’s embedded in the mad person’s psyche. Simply put, it’s a gift. A very dangerous one, but one that also has advantages.

I feel things more intensely than other people. The highs are higher, the lows are lower, pain at all the suffering in the world is stronger, and the wonder at all the beauty in the world is heightened. I’ve noticed that bipolar people tend to question established systems more, tend to think in different ways even when they’re neither manic nor depressed, and tend to be more creative (indeed, a great many brilliant artists and writers over the centuries have had bipolar or other forms of madness). At the same time, it causes immense suffering, and can be incredibly disruptive in people’s daily lives. That’s why many people with it choose to use medications and/or therapy to cope–although not all do. For some people, going without treatment is best, although that’s a very dangerous choice.

I view madness as a gift. It’s not simply a “brain disorder,” or even a “mental illness”–it’s a part of who I am. You can’t separate me from it, or it from me.

Why am I saying all this? Because NAMI doesn’t respect, or even acknowledge, this perspective. NAMI believes that mental health advocacy consists of attempting to expand access to the established treatment system instead of attempting to fight human rights abuses within it (and believe me, these do occur, and far more often than most people realize). They believe that fighting stigma consists of reducing madness to another condition, another disease, that should be treated like any other.

This won’t work. A mad person isn’t a person who happens to suffer from a brain disease, any more than an introvert is someone who happens to suffer from a social abnormality. As long as madness is viewed as a wholly negative, deviant thing, stigma will exist.

Finally, I’d like to question whether NAMI is really quite the grassroots movement it claims to be. According to Mother Jones magazine, NAMI received $11.7 million in contributions from drug manufacturers between 1996 and mid-1999. I personally find this disturbing–if even the supposed grassroots activist groups are funded by Big Pharma (whose financial ties to the psychiatric profession have recently been revealed as well), then what’s to say that they’ll really act in the interest of the mad instead of the companies that make money off of madness? Over-medication is a huge problem today–and NAMI says nothing about that. Could these two be connected?

All in all, I don’t consider myself “mentally ill”–I’m mad, and I’m proud to be so. It’s a gift. NAMI, however, disagrees–according to their website, one of their goals is to “end mental illness.” To end mental illness is to end a set of types of personality–ways of being that often bring suffering and sometimes death, but also bring forth works of creative genius and, more to the point, determine the ways in which a fifth of this country experiences life and thinks and feels about it.


~ by theholyfool on April 28, 2009.

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