Listening to Madness

Listening to Madness - Why some mentally ill patients are rejecting their medication and making the case for 'mad pride.'

By Alissa Quart | NEWSWEEK
Published May 2, 2009
From the magazine issue dated May 18, 2009
http://www.newsweek.com/id/195694

We don't want to be normal," Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn't take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still.

I met Hall one night at the offices of the Icarus Project in Manhattan. He became a leader of the group—a "mad pride" collective—in 2005 as a way to promote the idea that mental-health diagnoses like bipolar disorder are "dangerous gifts" rather than illnesses. While we talked, members of the group—Icaristas, as they call themselves—scurried around in the purple-painted office, collating mad-pride fliers. Hall explained how the medical establishment has for too long relied heavily on medication and repression of behavior of those deemed "not normal." Icarus and groups like it are challenging the science that psychiatry says is on its side. Hall believes that psychiatrists are prone to making arbitrary distinctions between "crazy" and "healthy," and to using medication as tranquilizers.

"For most people, it used to be, 'Mental illness is a disease—here is a pill you take for it'," says Hall. "Now that's breaking down." Indeed, Hall came of age in the era of the book "Listening to Prozac." He initially took Prozac after it was prescribed to him for depression in 1990. But he was not simply depressed, and he soon had a manic reaction to Prozac, a not uncommon side effect. In his frenetic state, Hall went on to lose a job at an environmental organization. He soon descended into poverty and started to hear furious voices in his head; he walked the streets of San Francisco night after night, but the voices never quieted. Eventually, he went to a mental-health clinic and was swiftly locked up. Soon after, he was diagnosed with schizophrenia. He was put in restraints and hospitalized against his will, he says. For the next year, he bounced in and out of a public psychiatric hospital that he likens to a prison. The humiliation and what he experienced as the failure of the medication were what turned him against traditional treatment. Since then, Hall has been asking whether his treatment was really necessary. He felt sloshily medicated, as if he couldn't really live his life.

Hall and Icarus are not alone in asking these questions. They are part of a new generation of activists trying to change the treatment and stigma attached to mental illness. Welcome to Mad Pride, a budding grassroots movement, where people who have been defined as mentally ill reframe their conditions and celebrate unusual (some call them "spectacular") ways of processing information and emotion.

Just as some deaf activists prefer to embrace their inability to hear rather than "cure" it with cochlear implants, members of Icarus reject the notion that the things that are called mental illness are simply something to be rid of. Icarus members cast themselves as a dam in the cascade of new diagnoses like bipolar and ADHD. The group, which now has a membership of 8,000 people across the U.S., argues that mental-health conditions can be made into "something beautiful." They mean that one can transform what are often considered simply horrible diseases into an ecstatic, creative, productive or broadly "spiritual" condition. As Hall puts it, he hopes Icarus will "push the emergence of mental diversity."

Embracing "mental diversity" is one thing, but questioning the need for medication in today's pill-popping world is controversial—and there have been instances in which those who experience mental extremes harm themselves or others. Icaristas argue that some of the severely mentally ill may avoid taking medication, because for some the drugs don't seem to help, yet produce difficult side effects. And while some side effects like cognitive impairment are surely debilitating, others are more subtle, such as the vague feeling that people are not themselves. Icaristas call themselves "pro-choice" about meds—some do take their drugs, but others refuse.

Mad pride has its roots in the mad-liberation movement of the 1960s and '70s, when maverick psychiatrists started questioning the boundaries between sane and insane, and patients began to resist psychiatric care that they considered coercive. But today the emphasis is on support groups, alternative health and reconsidering diagnostic labeling that can still doom patients to a lifetime of battling stigma. Icarus also frames its mission as a somewhat literary one—helping "to navigate the space between brilliance and madness." Even the name Icarus, with its origin in the Greek myth of a boy who flew to great heights (brilliance) but then came too close to the sun (madness) and hurtled to his death, has a literary cast.

Although Icarus and Hall focus on those diagnosed as mentally ill, their work has much broader implications. Talking to Hall, I was acutely aware just how much their stance reflects on the rest of us—the "normal" minds that can't read through a book undistracted, the lightly depressed people, the everyday drunks who tend toward volatility, the people who "just" have trouble making eye contact, those ordinary Americans who memorize every possible detail about Angelina Jolie.

After all, aren't we all more odd than we are normal? And aren't so many of us one bad experience away from a mental-health diagnosis that could potentially limit us? Aren't "normal" minds now struggling with questions of competence, consistency or sincerity? Icarus is likewise asking why we are so keen to correct every little deficit—it argues that we instead need to embrace the range of human existence.

While some critics might view Icaristas as irresponsible, their skepticism about drugs isn't entirely unfounded. Lately, a number of antipsychotic drugs have been found to cause some troubling side effects.

There are, of course, questions as to whether mad pride and Icarus have gone too far. While to his knowledge no members have gravely harmed themselves (or others), Hall acknowledges that not everyone can handle the Icarus approach. "People can go too fast and get too excited about not using medication, and we warn people against throwing their meds away, being too ambitious and doing it alone," he says.

But is this stance the answer? Jonathan Stanley, a director of the Treatment Advocacy Center, a nonprofit working to provide treatment for the mentally ill, is somewhat critical. Stanley, who suffers from bipolar illness with psychotic features, argues that medication is indispensable for people with bipolar disease or with schizophrenia. Stanley's group also supports mandatory hospitalization for some people suffering severe mental illness—a practice that Icarus calls "forced treatment."

Scholars like Peter Kramer, author of "Listening to Prozac" and "Against Depression," also take a darker view of mental extremes. "Psychotic depression is a disease," Kramer says. As the intellectual who helped to popularize the widespread use of antidepressants, Kramer is nonetheless enthusiastic about Icarus as a community for mad pride. Yet he still argues that mental-health diagnoses are very significant. "In an ideal world, you'd want good peer support like Icarus—for people to speak up for what's right for them and have access to resources—and also medication and deep-brain stimulation," he says.

For his part, Hall remains articulate, impassioned and unmedicated. He lives independently, in an apartment with a roommate in Oregon, where he is getting a master's in psychology at a psychoanalytic institute. He maintains a large number of friendships, although his relationships, he says, are rather tumultuous.

Nevertheless, it's not so easy. Hall periodically descends into dreadful mental states. He considers harming himself or develops paranoid fantasies about his colleagues and neighbors. Occasionally, he thinks that plants are communicating with him. (Though in his mother's Native American culture, he points out, this would be valued as an ability to communicate with the spirit world.)

On another night, I had dinner with eight Icarus members at a Thai restaurant in midtown Manhattan. Over Singha beer, they joked about an imaginary psychoactive medication called Sustain, meant to cure "activist burnout." It was hard to imagine at the dinner what Hall had suffered. While he and his "mad" allies were still clearly outsiders, they had taken their suffering and created from it an all-too-rare thing: a community.

2009

Thank you for pointing this out to me, silent octavius. As you can see, I am drawn to that drawing from the Newsweek page. I was on the verge of going back on psychiatric medication just before I read this ... nothing that will impair cognition ... maybe just some Seroquel. After reading this, I certainly do not want to "report myself to a mental health clinic" for fear of being detained. I have been having some fits lately.

I've been thinking about the unconscious mind and the role it plays in self-destruction. My animal body misses its mother, and I regret moving out to Washington. I am told I have to stay where I am for a year, but if I misbehave I will be told to vacate. Maybe this is actually what I want. I can't possibly want to be homeless, and I don't like feeling ashamed after having been "witnessed" in a psychotic fit resembling demonic possession. My extreme mental states could be a gift?

I just hate the idea of being homeless out here, lugging suitcases filled with books, notebooks, and dirty clothes along city streets, on and off busses. That's the part that makes me want to die. I would rather be homeless near the woods and fields of my hometown back in Dirty Jersey.

I don't want to end up in a hospital because the doctors tend to prescribe antipsychotic drugs that really impair my ability to think. This can be extremely frustrating.

About the side-effects of antipsychotic "medication" (from the article): And while some side effects like cognitive impairment are surely debilitating, others are more subtle, such as the vague feeling that people are not themselves.

Inhibited by civilization, the sex drive has festered in the unconscious mind producing "mental illness." In Finnland, they "treat" alcohol dependency with "sex therapy." Besides the frustrated sex drive, I also believe we have a built-in death-instinct. In other words, these bones want to return to the earth.




Related: The Icarus Project

Bipolar or Waking Up?

Although I've never had an " official " diagnosis, I can say that I have anxiety and depressions issues. And yet, i'm still wary of showing up at doctor mindbender's door. I have been trying to get through my symptoms the best way I can. While i'm trying not to become dependant on drugs such as alcohol, cannabis and tranquilizers by using certain cognitive therapies and meditations, I often find they can help when the going gets too rough.

I think madness and death are the things that scare the shit out of most people. Madness is wild and unpredictable and death is the end of the ride, things most people try to avoid and deny. I find that as I get older these things become more interesting for me to study and meditate upon if only because they contain telling counterpoints to the culture we live in.

X-Hentric wrote:[img]About the side-effects of antipsychotic "medication" (from the article): And while some side effects like cognitive impairment are surely debilitating, others are more subtle, such as the vague feeling that people are not themselves.

This was exactly my experience from a brief stint on Effexor about 10 years ago - like looking through life with foggy glasses. I have since avoided all formal medications. I did try HTP-5 or whatever a few months back - no real effect. I increasingly come to accept that this is just my fate. My lows are low, and my highs aren't that high (but they are still higher than the numbing blurry middleground that meds seem to create for me). My cousin has more extreme psychological issues and literally can end up in prison if he goes off medication for even a few weeks. I'd get him to pay us a visit, but he's off in the world -who knows where - searching for his truth.

I think I may check out the forums at The Icarus Project.

I will make a note of it on the top of the page at isis.phpbb3now.com ... maybe Diogenes II will be inspired by that place. I'll still migrate some stuff over here when I am able.

- X

Thanks for the article.

Everybody's fucking mad. Society is insane. Just point it out to them, and suddenly you're the weird one.

X-Hentric wrote:I think I may check out the forums at The Icarus Project.

I will make a note of it on the top of the page at isis.phpbb3now.com ... maybe Diogenes II will be inspired by that place. I'll still migrate some stuff over here when I am able. - X

Generally speaking, some of those sites seem to be a forum for complaining about one's mental condition (ie. "I feel terrible today"). I'm all for complaining, but I think the criticism should be directed at the right places - humanity, society and the various corrupt systems which attempt to enslave us through lies and deceit. I only took a quick look at that site, but wonder how many people there know who Cioran is and can quote critical thinkers from through-out history the way you can? Seriously... some people are depressed because they are shallow, and some people are depressed because they have fought hard to strip away all the delusions in life and faced some very harsh philosophical realities. I'm not trying to belittle anyone who is depressed or suggest that their pain is any less, but I'm not interested in some house wife who is feeling down because her husband doesn't want to boink her anymore and she finds the soaps on TV uninspiring. I haven't found very many sites that can dig as deeply as what was happening on the previous forum with you and Nat (what happened to him?) and the others. Very very few people in this world see even a fraction of the copious bullshit that is out there, and that applies to be people who are depressed just as much as those that aren't. I say we keep fighting the good fight against the cause of our problems, and not blame it all on brain chemistry or the like. As has been said before, how does a rational sane person live in an irrational and insane world?

Blaze wrote:I'm not trying to belittle anyone who is depressed or suggest that their pain is any less, but I'm not interested in some house wife who is feeling down because her husband doesn't want to boink her anymore and she finds the soaps on TV uninspiring.

I hear you Blaze loud and clear. I was browzing through there and had the odd sensation of being an outcast even among outcasts. There were even people suggesting to make money doing what I call "spamming" and bragging about the $5000 check they got last month (spamming). Of course they did not call it spamming.

Thanks for verifying that for me. I was experiencing "cognitive dissonance" for a while there. I will still check it out, but there's no place like home! I need a place where I am free to do whatever it is we do here.

Hey Number Six! Are we the last of the Mohecans??? That article inspired me too. There have been several articles submitted by Silent Octavius that really got my attention ... Like Escape from the Zombie Food Court by Joe Bageant. I like the stuff that faces unpleasant facts.

Oh, and --- I've been trying to contact Naturyl and checking his Dog Dao blog (dogtao.blogspot.com). He may have been detained or worse. And yet, he may just be laying low and regrouping. We can't take anything for granted. That's kind of why I set this site up and will keep doing so as needed. There is a need for a haven such as this, a place where we don't have to downplay our intelligence. Sometimes people pretend to be stupid just to be well-liked. That's dishonest - and it is falling right into line with those who try to control the masses. I still check in every now and then at whywork.org/forum ... It's like some science fiction story where the characters just disappear ... one after another ... and nobody notices or cares (or could do anything about it even if they did care).

Blaze wrote: I say we keep fighting the good fight against the cause of our problems, and not blame it all on brain chemistry or the like.

I agree. In fact, I think I will keep the number of forums down this time around (unless there are any requests or demands for adding some special forums).

Don't let the bastards grind you down!

I'm not necessarily saying I don't have a chemical imbalance in my brain, just pointing out that my "negative thoughts" (or attitude) began when I was about 13 which is the same time I realized that the authority around me at the time (mainly teachers) were subject to the very same petty human weaknesses that some of my fellow 13 year olds were (and in many cases, the adults were far worse). Nothing shatters the myth of youthful innocence like the discovering that the very people who are entrusted with guiding, educating and fostering your intellectual development are insecure idiotic morons more interested in career advancement, competitive one-upmanship, and screwing under age girls (and in at least one case - boys - not me though). And in adulthood things go downhill from there - with the political authorities that govern our every move & thought and make the vindictive power-seeking teachers of our schooling look like veritable saints in comparison. The enemy is human ignorance (based largely on greed and superiority). Always has been. Always will be. But unfortunately, human ignorance can not be fought (as one might think) with human intelligence. Ignorance carries a bigger stick. I've got the bruises to prove it. But at least we can take comfort in the words of others who have come to similar conclusions, and maybe, use our own form of system sabotage to at least survive.

I don't know where you came from Blaze, but your fearlessness is inspiring. Your honesty and your confidence is virtuous. There is nothing I can offer you to reward you for your courage. I could play my drum for you, but all I have is a tin can and a couple twigs.

Blaze wrote:Unfortunately, human ignorance can not be fought (as one might think) with human intelligence. Ignorance carries a bigger stick. I've got the bruises to prove it. But at least we can take comfort in the words of others who have come to similar conclusions, and maybe, use our own form of system sabotage to at least survive.

The masses are uneducable. Is there a way we can organize, sabotage, and survive?

If so, let's do it.

X-Hentric wrote:I don't know where you came from Blaze, but your fearlessness is inspiring. Your honesty and your confidence is virtuous. There is nothing I can offer you to reward you for your courage. I could play my drum for you, but all I have is a tin can and a couple twigs

I don't want to highjack the thread, but the interesting article that Silent Oct. posted naturally leads to discussion. Unfortunately, any perceived confidence or fearlessness on my part only comes from my abandoning all hope - as you discussed in that post quoting Derrick Jenson on the other forum a month or so back: http://isis.phpbb3now.com/viewtopic.php?f=23&t=481 That really elaborated and clarified thoughts I've had for a few years about the serious dangers of "positive thinkers" or optimists in a society.

X-Hentric wrote:The masses are uneducable. Is there a way we can organize, sabotage, and survive? If so, let's do it.

I probably shouldn't have used the word "sabotage" as it implies the active destruction of the whole system. Sadly, I only meant that by our knowledge and individual resistance we can undermine their attempts to "get us" (in part at least, they already "got us" in some ways). Can our kind hold out any hope for a more a organized, widespread and effective strategy for change? As for survival - nobody survives. That's the best part, right?

Blaze wrote: ... by our knowledge and individual resistance we can undermine their attempts to "get us" (in part at least, they already "got us" in some ways). Can our kind hold out any hope for a more a organized, widespread and effective strategy for change? As for survival - nobody survives. That's the best part, right?

This was basically the conclusion we had come to at gortbusters.org - that the only environment we could defend was the one between our ears. Some of the "gort busters" were very into "wilderness survival" whereas I was more inclined to "prepare to die." I find that reflecting on my own death is a great way to keep from being overwhelmed by what is going on within and without.

Fearlessness (courage) is necessary if we are to be able to explore our own inner lives. There are very powerful subconscious forces within us. When they erupt, it can be terrifying. We say, I was not myself ... and yet ... no, we were our truest self ... perhaps somewhat of a monster at times. I think Nat (Diogenes II) was onto something when he suggested we give up any ideas about changing this world.

Diogenes II wrote: Dissenters are in much less danger these days, because there's so little chance of anyone actually listening. The various methods of discrediting, marginalizing, and dismissing non-conformist elements of the culture have worked their magic well.

Gaining insight into our own baffling behavior (becoming more alert, more aware) happens within us. That is the direction I would like to move in, where we are able to become more fearless in our thinking. Who was it that mentioned, as they age, they find madness and death to be more and more facsinating? I guess I am drawn to the shadowy aspect of our existence.

Am I able to come to terms with (accept and embrace) the possibility that I am a bitter man with a chip on his shoulder? Am I able to see my Shadow? Rather than repress the beast, the monster, am I able to befriend it, to understand it?

I have repeatedly behaved in ways (when drunk) that I deeply regret. I begin to wonder who I really am. I wonder if I am delusional. So, again, it does take courage to see things as they really are, especially seeing ourselves as we really are. Maybe when we "give up hope" we are able to see more clearly.

Blaze wrote:Unfortunately, any perceived confidence or fearlessness on my part only comes from my abandoning all hope - as you discussed in that post quoting Derrick Jenson on the other forum a month or so back. That really elaborated and clarified thoughts I've had for a few years about the serious dangers of "positive thinkers" or optimists in a society.

Thanks for mentioning this. I migrated that post, Abandon Hope, over here: Hopelessly dangerous to those in power and I look forward to discussing this.

As for positive thinkers, I will post something in the DANGEROUS thread that I recall from something written by sushil_yadav.