When I was on the job market last year, by far the toughest hurdle was convincing interviewing eyes and ears that my hacker and survivor project were connected in some fundamental ways. I think in the end, I was successful at times but it was difficult for some folks to see the connection in part because most professors knew little or zilch about survivor politics so I had to lay that ground work and then toss out the connections, which included free speech, the politics of freedom and self-determination, attacks on corporate/closed science. Now with the Zyprexa scandal and the support coming from Free Culture, these two worlds have indeed moved even closer together than before. (Thanks Jonah for pointing out).

So this is a little old news but it is still interesting news about freeing the suppressed zyprexa documents. Here is some additional background information .

I am about 2/3 over with my haul from Edmonton to San Juan, PR (laying over in the beautiful JFK) and am too tired to blog anything much of substance but do check out Furious Season’s impassioned and excellent commentary on the recent NYTimes article (and this one )that reveal how Eli Lily knowingly downplayed the risks of Zyprexa. And if you read the second article, you will find out what Viva Zyprexa means.

Here is Eli Lily’s press release, which I have included on the next page as these things tend to vanish…

(more…)

So one of the darling drugs for bipolar disorder (and I believe schizophrenia) has been Zyprexa.. Marked by the pharmaceutical company as a wonder drug, for being safe and effective, it has just come out that Eli Lilly, maker of the drug, hid and downlplayed the severity of side-effects.

This is big because critics from survivors to academics and journalists and have been attacking pharmaceutical science for this very reason… This explicit revelation is thus pretty gynormous.

I am frantically getting ready to go to PR, so that is I can say but more later…

I just finished a pretty good article The Myth of Thomas Szasz, about the man who most famously attacked the psychiatric profession in part by claiming mental illness was manufactured, a myth. In a nutshell here is the point of the article:

“It is hard to doubt the reality of mental illness, especially when the suffering of affected individuals is so complete and the impairment so extreme, when psyche and identity are crippled almost beyond repair. But it is also remarkable how much of modern psychiatry is still theoretical rather than empirical, and how many of the supposed mental illnesses that appear (and multiply) in the Diagnostic and Statistical Manual of Mental Disorders have no known biological underpinnings or explanations. Although Szasz’s critique often became a caricature, his intuition about the limits and deformations of modern psychiatry cannot be ignored. Many sick people have surely benefited from psychiatric treatment, both “talk therapy” and pharmacotherapy. But psychiatry’s long history of error—from snake pits to ice baths to spinning chairs to electroshock to lobotomy—should give us pause. Skepticism is not backwardness, even if Szasz often took his skepticism to rhetorical extreme”

The part I found most interesting (and now I must read it):

A piece in The New York Times Magazine[by Szasz] titled “Mental Illness Is a Myth” reportedly induced more reader response than any article in the magazine’s history. If he had preached from the pulpit with The Myth of Mental Illness, he had now nailed his thesis to the church’s front door.

I must must check out the reader response!

For those who know little about what came to be known as anti-psychiatry, this article is worth reading. It is written well and presents the virtue of skepticism, even if extreme, which is what Thomas Szasz, was all about. My only complaint is that if you know nothing of anti-psychiatry or the visible and patient-led challenge to psychiatry that followed in the 1970s, you would think that Thomas Szasz was entirely in a class of his own. While he may be the most famous figure, and may have certainly led the charge in many resepcts, there were others (that is critical psychiatrists like him (and not just in the US) not to mention wide spread critique from various social quarters. But a great great article otherwise.

It is good to see the New York Times critically report on the (ab)use of cocktail psychiatric drugs used for treating children (and see this older New Yorker article The Pediatric Gap on the general lack of saftey testing for drugs given to kids).

What is a shame, however, is that the total lack of critical interrogation that there may be actual environmental causes for some of these problems and this, despite the publication of new studies from leading medical journals (such as Lancet) that finally are addressing the possibility that over 200 chemicals are causing havoc on brains, behavior, and thus life… (kinda a no brainer at some level even if we do need more specific studies…)

As the article on the chemicals reports, critics of they study say they Lancent authors are verging on scare-mongering, because there is no proof of a pandemic.. Well, we do need more proof but does that mean we should not study what is so understudied (and hard to study because how does one measure the effects of the synergistic combination of x number of chemicals over x many years??)

But as the NYTimes piece shows there does seem to be a pandemic in prescribing people and kids psychiatric medications. So possibly there is some connection to be made here??

And what I can’t understand is why it is that those within the medical establishment who are confronting kids with so called behavioral and those that are critics of overprescription are not asking what may be behind some of these problems…

While I agree that a percentage of the kids being put on drugs are totally fine and just being kids, I am sure there are many others who are suffering. And while some of these psych drugs may be an acceptable and necessary short term solution, this NY Times article should make us pause, and seriously pause, about the viability of these drugs as a realistic solution, given the horrible side effects they cause (just read the article). Even if some so think these are necessary, these are crude therapies.

I think we need another “Silent Spring” with an eye toward possible behavioral effects to shake people not out of an apathy, but from a myopia that seems satisifed with engaging only with symptoms and surfaces.

.

All the soarings of my mind begin in my blood.
-Rainer Maria Rilke

I have made it back from NYC after a pretty intense few days spent at the Open Minds Conference and Icarus-hosted workshops, “Get Your Freak On.” Both were incredibly interesting and I felt the ambivalent rush of excitement and fear that follows the prospect of working on a new project. While I have spent some time researching critiques of psychiatry, I have not spent all that much time with the people involved, academically and personally, in the various movements. And there is nothing like seeing in the flesh and blood some very passionate political work to get the intellectual excitement brewing.

The first time I went to a survivor conference and protest I was living in San Francisco, deeply involved in my hacker research. I learned about the movement from a civil libertarian John Gilmore, who drew inspiration from psychiatric survivors to develop his free speech arguments for drug legalization. I had never heard of them and was intrigued so I naturally poked around the web. And I was fortunate to find out that their conference was being held the following weekend less than 10 blocks from where I was living at the time. I made time to go and unsurprisingly, it was a powerful event, perhaps the most stunning conference I had ever been to. There was something awfully inspiring about a political movement in which the members had experienced heavy doses of trauma, often through heavy “doses” of “treatment” and yet found the energy, will, and life to engage in political action, and in a society that does most everything to dampen the fire of politics.

This weekend was no less inspirational. Even at the academic conference, the personal stories of trauma, survival, and the complex ethical decisions of “choice” in a landscape dominated by one medical model, erupted frequently. These were important eruptions that sometimes probably for some felt out of place in an academic setting where such outpourings are discouraged, buried deep away never to disturb the “calm” and “rationality” of talks. But without them, the conference would have felt dry, staid, and sterile, which would precisely have been the most disappointing atmosphere to have created for this environment.

All the talks were engaging and illuminating and it was great to see and hear many folks working on these topics and especially working to carve out a different political and somatic reality. For me, the talks by David Oaks and Jackie Orr were the most electric and hopefully I will soon get the videos of them as well as most others (as I (tried) to tape most of the conference) up for those who are interested. In the meantime, David Oaks has already
released his talk, which is worth checking out.

One of the more interesting parts of the conference was that it gave a clear indication of one of the great successes and strengths of the mad movement, which is its staying power, its ability to survive (even if not necessarily known to wider publics) generation after generation, which is more surprising given that the vitality of so many of the political movements of the 1960s and 1970s, vanished or languished. This continuity was marked by David Oaks keynote speech entitled “Unite for a Nonviolent Revolution in the Mental Health System: What 30 Years in the Mad Movement Have Taught Me” and just by the fact that he and Celia Brown were there, both who have been involved for decades.

Beyond that, it was also the new faces, the new groups, that include Icarus, and the
Freedom Center, that attest to the ability for this Mad Movement to thus far escape the cruel ravages of time and its intervention, often causing rifts within and across generations.

Sasha Dubrul who gave a talk during the activist panel and founded Icarus four years ago talked about the deep alienation he felt when he first had encountered the rhetoric of psychiatric survivors and, even despite his deeply critical stance against psychiatry. He wanted to create an organization and a message and a place that “resonates with our actual experiences of “mental illness” rather than trying to fit out lives into a conventional framework.” It is a message that swoops into many territories that includes a stiff, unrelenting critique of psychiatry and the pharma industry all the while admitting that not everyone can survive without pharmaceutical drugs (and being deeply grateful for this), all the while also providing pathways to alternatives. It is not easy territories to navigate, due to the and cracks and crevices between positions but then again, most of life is filled with these bumpy textures and not a smooth plane free contradictions.

If Icarus was born in part because existing organizations did not adequately address existing needs and desires, it did not grow and move away from existing organization but moved closer to them and is now is in alliance with
MindFreedom. And this is key. Difference in a political movement adds vitality, depth, opportunity but this can only be brought into healthy fruition with alliances. Otherwise, deep fragmentation follows, which given the already deeply fragmented nature of our lives, and of the political landscape, can end in political stasis. But so far, the Mad Movement has over years taken “mad anger” to fight a mad system, and given the last 30 years, I am sure will provide many more decadesof mad pride.

Barely 3 weeks into my time in Edmonton, I am off to NYC, so that I can attend the following conference: OPEN MINDS: CULTURAL, CRITICAL, AND ACTIVIST PERSPECTIVES ON PSYCHIATRY. I resisted going, in part because I travelled plenty this summer, in part because traveling is such a pain now, but mostly because it somewhat preverse to hop over to NYC in a day for 3-4 days when it took me a week of non-stop driving to get out here in the first place! But the allure of the conference was too strong, so back I go, down south and out east.

So I get a daily ‘google’ email with the day’s psychiatry news. Rarely is there any news that touches on my hacker/Internet material but this article stuck out like a sore thumb as relevant: The Development of the Self in the Era of the Internet and Role-Playing Fantasy Games in the American Journal of Psychiatry. But I have to say there is one heck of a lot of slippery argumentation that goes on in there, an article whose progtagonist is “Mr. Aâ??s” whose “internal world had been colonized by what are termed “massively multiplayer online role-playing games,” or MMORPGs for short (11). Sometimes termed “heroinware”…”

I will just let interested parties read the rest (if you have access to the journal, which requires some sort of subscription or University access)

About a month ago, I posted an interesting article from the Wall Street Journal on The rising tide of forced treatment.

Below are a range of letters published in the Wallstreet Journal in response to the article. I have not seen the originals but got them via a MindFreedom mailing list.

The collection of letters are the mosy crystalline window into the devastatingly complex issues concerning psychiatric care, human autonomy, law, and suffering that I have seen in a long, long time. Do check it out.

Wed. February22,2006

LETTERS

MindFreedom International sends out alerts as part of our “MindFreedom
Shield” to encourage and support people who are seeking an underground
railroad to shelter them from coerced psychiatric drugging. Such
underground railroads provide support and assistance in a manner that
is completely legal and essential for these individuals. But an
underground railroad itself isn’t a program of MindFreedom, as you
reported.

You described MindFreedom as an organization of “mentally ill people
that opposes coerced drug treatment.” While many members are people who
have experienced abuse in the mental health system, or “psychiatric
survivors” as we call ourselves, we don’t refer to our membership as
“mentally ill.” In fact, many have spent much of their lives
passionately defending themselves against such damaging, false and
unscientific labels.

While you quoted several proponents of forced drugging, you ought to
have quoted even one of the many organized groups of psychiatric
survivors. After all, we are the ones who end up on the sharp end of
the needle.

David Oaks
Director
MindFreedom International
Eugene, Ore.

[other letters:]

For the Mentally Ill: Caring or Incarceration?

One of the great tragedies of modern psychiatry is the large number of
incarcerated individuals who are mentally ill or drug addicted (“A
Doctor’s Fight: More Forced Care for the Mentally Ill,” page one, Feb.
1). This is the inevitable consequence of our reluctance to use caring,
coercive approaches, such as assisted outpatient treatment. A person
suffering from paranoid schizophrenia with a history of multiple
hospitalizations for being dangerous and a reluctance to abide by
outpatient treatment is a perfect example of someone who would benefit
from these approaches. We must balance individual rights and freedom
with policies aimed at caring coercion. Our responsibility to each
other and our respect for personal rights lie at the center of our
social and moral choices as Americans.

The Treatment Advocacy Center is to be commended for its sustained
advocacy on behalf of the most vulnerable mentally ill patients who
lack the insight to seek and continue effective care and benefit from
assisted outpatient treatment.

Steven S. Sharfstein, M.D.
President
American Psychiatric Association
Arlington, Va.

While forced care is sometimes necessary when a person is a danger to
himself or others, the call to expand its usage underestimates the
risks of imposing a different standard of civil liberty onto people
with mental illness than is guaranteed to the rest of us.

E. Fuller Torrey’s movement is part of an attitude of paternalism from
which people with mental illness are working hard to break free.
Moreover, his database of anecdotes on violence is misleading since
most people with mental illness aren’t violent and are more often the
victims of crime, not the assailants. There is a long history of our
country taking away the rights of people with mental illness who are
penalized merely for being “scary” and “burdensome.” It is time to go
forward, not backward.

Anthony M. Zipple, Sc.D., M.B.A.
Chief Executive Officer
Thresholds Psychiatric
Rehabilitation Centers
Chicago

My 41-year-old brother has suffered from serious mental illness since
he was 15. At times, his behavior has become sufficiently threatening
or dangerous to require involuntary hospitalization. Like many others
with this disease, he doesn’t believe that he is ill (a neurological
deficit known as anosognosia) and therefore refuses to voluntarily
comply with treatment or to take medication, even though it has proven
remarkably effective. As a result, my smart, funny and talented brother
has spent much of the past 25 years homeless, jobless and delusional. I
can safely say to the civil libertarians that this isn’t the life he
would have chosen for himself; it was chosen for him by his untreated
illness.

Before Kendra’s Law, there was nothing my family could do to force him
to obtain treatment. Although the law isn’t a panacea and the mental
health system is a disgrace, being forced to stay in treatment is the
only chance he has of resurrecting his life.

Shari L. Steinberg
New York

Dr. Torrey complains about “taking heat” for being “politically
incorrect,” but he’s not really paying any penalty for his position. A
real penalty, however, is being paid by those who are targeted by the
laws he pushes through. To force outpatient “treatment” on anyone who
has ever been on the wrong end of the mental health system because of
the actions of the criminals in Dr. Torrey’s database is as unfair as
it would be to force such treatment on all physicians because of the
actions of Dr. Mengele.

Kent Reedy
San Diego

Using the term “force” to describe state laws authorizing court-ordered
treatment overlooks the point about what these laws are intended to
accomplish. Most people with serious mental illnesses are able to make
informed decisions about treatment. In a minority of cases, mental
illness negatively affects insight and ability to recognize the need
for treatment. The greatest risk is to the individuals themselves.

A New York State Office of Mental Health report shows that the impact
of Kendra’s Law has been positive in reducing hospitalizations,
arrests, homelessness and other consequences from lack of treatment.
And most people treated under Kendra’s Law say it has helped them. When
narrowly crafted and sufficiently protective of civil liberties, laws
authorizing court-ordered outpatient treatment can be both humane and
beneficial.

Michael Fitzpatrick
Executive Director
National Alliance on Mental Illness
Arlington, Va.