A response to a Cracked.com article 03/23/2011Posted by ALT in Humor, Patient Rights and Advocacy.
Tags: Batman Begins, Cracked.com, ECT, media representations of mental institutions, One Flew Over the Cuckoo's Nest, Paul Henri Thomas, symptom-exacerbation experiments
In order to infuse my posts with humor, I make it a habit to read Cracked.com almost daily; it’s one of the best satirical websites around (superior even to the Onion, in my humble opinion). But when I saw Item #5 in this article today, I didn’t find it particularly funny. It speaks to me of a trend — accelerating rapidly now because of the Jared Loughner incident — towards involuntary institutionalization of the mentally ill. I couldn’t let it stand; I had to raise my voice.
This is what I wrote to the author of that article:
I’m a big fan of Cracked… it’s a great source of humor, but, even more important, ya’ll are often DEAD ON when it comes to critiquing the madness this society embraces with open arms. So I’ll frankly admit I consider Cracked to be a good source of social commentary and information as well (and I bet I’m not alone in that…).
Which is why, Diana, I feel it necessary to share some information with you concerning your most recent article [“5 Useful Organizations You Think Are Evil (Thanks to Movies)”]. I understand that as a satirical writer you may sometimes need to bend, stretch, or exaggerate (though our society is ridiculous enough that usually it’s unnecessary)… but most of what you write about Hollywood portrayals of mental institutions under Item #5: Insane Asylums is sadly misinformed. Allow me to share some information with you:
1. You write that Hollywood falsely portrays asylums as places where “you’re… going to be held against your will and tortured by malevolent nurses with electroshock.”
Forced electroshock is NOT a thing of the past. It’s actually pretty common. Nearly 100,000 Americans will receive ECT [electro-convulsive therapy] this year, and while there aren’t specific statistics available for the US, in the UK it was found that 59% of ECT treatments were involuntary. [more info here].
To make it more personal, let me tell you about Elizabeth Ellis, of Moorhead, Minnesota. Earlier this winter, Elizabeth experienced a dozen court-ordered electroshocks. She found them terrifying and unhelpful. Finally, she had enough – on January 27, she stayed home instead of going to her “treatments.” Police were sent to fetch her from her house, and she has now been involuntarily committed to a psychiatric institution, where the involuntary ECT continues. MindFreedom International has started an advocacy campaign on her behalf. I encourage you to take a look and see if there is something you can do.
Here’s another case: Paul Henri Thomas, a Haitian immigrant signed a consent form for ECT at the Pilgrim Psychiatric Center (where he was involuntarily committed) in June, 1999. He underwent the treatment three times in June, but after the third treatment he refused to sign any more consent forms. And that’s when his doctors decided that he was no longer competent to give consent and would be subjected to involuntary ECT. He went to court for his right to refuse the treatment… and lost. Ultimately, he was involuntarily shocked almost 60 times. Here’s an instructive excerpt from the court proceedings:
At the third day of Thomas’ hearing yesterday, his attorney questioned a witness for Pilgrim.
“In June he was competent to consent and received three treatments, and some time after that he became incompetent. Is that correct?” asked Kim Darrow, an attorney for the state Mental Hygiene Legal Service, which is representing Thomas.
“I’m unable to answer that,” responded Dr. Robert Kalani, Pilgrim’s associate medical director.
But State Supreme Court Justice W. Bromley Hall swiftly cut off Darrow’s line of questioning, saying Thomas’ capacity to make decisions about his health may have changed since he consented to the treatment.
“There are a lot of people walking around with capacity for whatever,” Hall said in the Central Islip courtroom. “The fact that you have capacity today doesn’t mean you will have capacity tomorrow,” he added, prompting gasps from Thomas’ supporters…
Testimony ended with Darrow asking Kalani, given that Thomas has called the procedure “torture” and “evil,” how has it improved his life.
“Do you think you have improved the quality of life for Mr. Thomas?”
“I think we have,” Kalani answered.
2. Another false portrayal of mental institutions, you say, occurs “in Batman Begins, where a crazy administrator gives patients hallucinogens that induce nothing but bad trips.”
Actually, there’s a whole genre of psychiatric experimentation called “symptom-exacerbation experiments,” where researchers deliberately induce or exacerbate states of psychosis and mania in order to study their progression or test remedies. You see – the occurrence of psychosis is pretty unpredictable, making experimentation difficult; if it can be induced at a pre-determined time, it is much more experimentally convenient. In the 1950s and 60s, as you are probably aware, these experiments included dosing people with LSD and other hallucinogens (one example here).
There was a bit of a public outcry in the early 70s, but by the 1980s symptom-exacerbation studies were again a hot topic because a of the dopamine-causation hypothesis for schizophrenia. This time, stimulants like methylphenidate (synthetic cocaine, AKA Ritalin) and other amphetamines – known to exacerbate or cause psychosis — were also used. These symptom-exacerbation studies are a thing of today, not the past. Here are a few recent examples: this experiment (1993), this one (1997), and this one (1991). What I’ve linked to our academic articles published in prestigious journals. This points to the fact that the practice is accepted, and mainstream (given, of course, that the researcher masks what he’s doing with incredibly technical and dispassionate (ie objective/scientific) language).
Have you ever heard the story of Shalmah Prince? She’s a portrait artist from Cinncinnati, and in the late 70s she was diagnosed with bipolar disorder. In 1983, after going to the hospital voluntarily for treatment (she feared she was about to have a manic episode and wished to avoid it) she was enrolled in a study. She signed a consent form which read, “I, Shalmah Prince, agree to participate in a medical research study the purpose of which is to clearly diagnose my illness and determine whether treatment with lithium might provide long-term relief of my symptoms.” She didn’t have insurance and desperately needed treatment… it seemed like the best option at the time.
What actually happened was that she was abruptly withdrawn from lithium, which she had been taking for several years, and then injected with apomorphine, known to cause psychosis (withdrawal from lithium alone can cause psychosis/mania, too, especially if done abruptly without any tapering). In short, she was involved in a symptom-exacerbation study. Naturally, she soon suffered a severe manic/psychotic break. She was left in leather restraints for three days, and she herself says “After that, I was never the same person ever again.” She was severely traumatized. She was also billed nearly $15,000 upon discharge from the hospital. She lost most of her memory of the event, but in 1994, after reading a newspaper article on symptom-exacerbation studies, she slowly pieced together what happened. She forced the hospital to produce her medical records and attempted to sue; but she was unable to because the statute of limitations was only 2 years (trauma-induced memory loss being no excuse, I suppose).
Diana, I again stress to you that this is not ancient history… this is the present! Forced drugging, social isolation, stigmatization, beatings, confinement, etc. are also standard practice in institutions. For these reasons, I feel confident in stating that folks who are fearful of or resistant to involuntary commitment to asylums/mental institutions are completely justified. I support their right to determine, for themselves, what “wellness” is, and what treatments they think would be helpful.
And please don’t make the mistake of thinking that the seriously mentally ill are somehow “other,” that “this could never happen to me.” Oh, how many have thought that! Diana, it [an “extreme state of consciousness,” as they say] could happen to anyone.
So understand that I also support your right to refuse ECT, drugging, or commitment to a mental institution you don’t think would be helpful, Diana. I support your human right to define wellness for yourself.
In light of the recent Tucson shooting and the media bonanza concerning Jared Loughner (which has people, and LEGISLATORS, glibly calling for more and more involuntary commitment to “protect” the public from “psychotics”)… this issue is only going to get bigger and bigger. I urge you to reconsider what you have written in your article… I urge you to consider the very salient points of the mental health rights movement … I urge you to consider the tenants of the “Universal Declaration of Mental Rights and Freedoms”…
And most of all, I urge you to remember the parable of the Holocaust, which I find imminently applicable to this situation:
“First they came for the Jews
and I did not speak out –
because I was not a Jew.
Then they came for the communists
And I did not speak out –
Because I was not a Communist.
Then they came for the trade unionists
And I did not speak out—
Because I was not a trade unionist.
Then they came for me—
And there was no one left
To speak out for me.”
(Pastor Niemoeller, victim of the Nazis)
Diana, did you know that, actually, they came for the mentally ill first, before anyone else? Food for thought…
Analyzing ECT’s media appearances 02/07/2011Posted by ALT in Mental Health News, Patient Rights and Advocacy, Treatments.
Tags: APA, ECT, FDA, Lisa Andre, psychiatry, Washington Post
1 comment so far
One of my favorite axioms is:
There are no contradictions. If you think you’ve found one, check your premises; you will find that one of them is wrong.
The world was made to make sense. One of the worst things you can do to anyone is to convince him to accept that something doesn’t make sense, or even worse, that it might, but he has no power to make sense of it – only you can do that for him.
Contradictions can be monstrous: for example the contradictions between health.com’s ridiculously flawed slideshow presentation on Shock Therapy (one example of the recent press coverage of ECT) and the few clinical studies and countless reports of ECT [electro-convulsive therapy] survivors.
What’s the truth? Is ECT “likely one of the safest, if not the safest… treatment for severe depression that exists” as the slideshow quotes psychiatrist Dr. Charles Stone saying, or should we listen to the testimony of Marjorie E. Faeder, an ECT survivor:
The effects of ECT not only ruined my life, but it nearly destroyed my family and my marriage… my personal belief is that an investigation is in order to prove that ECT is indeed beneficial and not brain damaging. How can I feel differently when that so-called therapy has wrecked a major portion of my life?
(Marjorie Faeder, as quoted in Lisa Andre’s excellent book about ECT, Doctors of Deception)
The two messages completely contradict one another! There’s only one thing to do: let’s check our premises.
Premise: byline accurately reflects authorship
Premise: journalistic integrity is important to journalists, who are careful to check facts and construct their own stories accordingly
Journalists are strapped for time, especially in today’s media-flooded world, where there are literally thousands of daily sources of content. Dependence on time-saving mechanisms has therefore increased.
ENTER: the press release.
The press release is essentially a frame story. Instead of starting from scratch, a journalist can lean on a pre-existing structure, which usually comes complete with expert quotes and a strong thematic message.
But who built this frame? Because he who builds the frame determines the purpose of the structure (that all-important “thematic content”).
In 1977, after the screening of a somewhat scathing documentary on ABC called “Madness and Medicine,” the APA recognized it had a problem and started looking intently at the power of the press to shape public knowledge (ie “common sense”) about psychiatry. They hired PR firms. In house, they formed a Joint Commission on Public Affairs, which created position papers (Task Force Reports) spelling out the official party line on numerous topics, and a Roster of Media Contacts, containing trained “media psychiatrists” able to deliver official APA doctrine in convenient sound bytes (like this guy, for example).
The APA also began courting the press. In 1978 the APA hosted its first “National Symposium for Media Writers,”
…held in the resort town of Snowmass, Colorado, during ski season. Those reporters who produced the stories the APA liked best were eligible for special awards for reporting excellence, to be presented at the APA’s lavish conference.
…Reports who show up at the APA conference today are provided with free meals, phone lines, faxes, computers, and comfortable rooms for working on stories, as well as a stack of professional written press releases—complete with quotes from “experts”—which they may submit as articles under their own byline, without bothering even to attend the conference sessions.
(Doctors of Deception, p 126)
The ECT Frame Story
In her book (Doctors of Deception), ECT survivor Lisa Andre identifies what seems to be the basic frame story of most ECT reports in the news media (I’ve added a few of my own observations…):
- Electro-convulsive therapy is making a comeback.
- Hollywood’s the villain, not ECT. (Typically this includes a reference to the famous ECT scene in One Flew Over the Cuckoo’s Nest).
- But it’s not like that anymore. It’s safer, the technique has been refined, etc.
- Any memory loss is only temporary and trivial.
- Token dissenter (typically psychiatrist) quoted at the bottom.
- Usually complete lack of patient/survivor voice. The exception would be a simple “testimonial” story, where the patient is allowed a token quote like “it saved my life,” but given very little space to discuss it in a more complex manner. Kitty Dukakis is a great example of this.
It’s amazing to see the same basic outline pop up again and again: in the 1985 Boston Globe piece which forms the basis of Andre’s analysis, in 1993, again in 2001, in 2006 (at which point Kitty Dukakis, ECT poster-girl, is inserted into the frame), 2008… and it’s shown up in 2011 a number of times—here and here for example—because of the FDA’s recent review of the ECT issue.
When a news article comes along that doesn’t follow the frame, it makes for a bold contrast. Suddenly, the issue doesn’t seem so simple; controversy is acknowledged openly. One patient describes going through the treatment as “being subjected to torture,” while another says it “saved her life.” Instead of asserting that its safety has been “proven,” the author (who must have, GASP, actually checked the medical journals for clinical trials!), includes the information that “essentially no research had been done on ECT’s effects using functional MRI imaging, repeated brain wave (EEG) studies, or autopsy examinations of patients.”
With this frame in hand, it’s relatively easy to tell which reporters went with the APA-provided press release and which ones decided to go out on a limb and do some actual reporting. And by looking closely at the APA’s press releases on their website, you can identify frame stories for a host of other mental health topics: neuroleptics, antidepressants, lay counselors vs. trained “professionals,” biochemical imbalances…
Readers have it just as bad as journalists when it comes to the “digital information vs. time” ratio. Critical thinkers must learn how to filter, to use analyses of psychiatry’s frame stories to determine for ourselves what is an attempt at objective reporting and what is merely press release.
Good luck, fellow thinkers!
Tags: ECT, FDA, Lisa Andre, NY Times, survivor voices
1 comment so far
January 23, 2011: the New York Times published an article about the upcoming FDA review of the “risk level” of electroshock devices (read it here). In effect, this will be a review of the procedure – Electroconvulsive Therapy [ECT] to its supporters and Electroshock Treatment [EST] to detractors - itself. Although the therapy in its modern form has been practiced since 1937, the first clinical trials or formalized research on its efficacy were not done until the 1970s (and even these were small and not up to current FDA standards). A FDA grandfather clause has prevented the electroshock devices from being subjected to the rigorous review process now in place for all other medical devices.
The push is to reclassify electroshock devices to the “medium risk” level, a class that includes syringes and surgical drills. This would almost certainly facilitate a more widespread practice of this very controversial therapy, which is already on the rise in the US - about 100,000 American per yer receive the treatment.
New York Times author Duff Wilson lavishes attention on psychiatrists in favor of the procedure, but only begrudgingly allows for even the existence of an opposition. Two quick (and mostly paraphrased) quotes from Dr. Peter Breggin and Dr. John Breeding give a brief snapshot of detractors’ arguments against EST.
But where are the quotes from actual people who have received the treatment?
Given that very little actual research has been done on the topic, it seems doubly important to access the wisdom that does exist – experiential and qualitative knowledge gained through actual encounters with EST, its benefits (if any), and its side effects.
So, in the true spirit of systems of care (letting the client speak and make decisions for him/herself), here is a bit of that all-important client voice so conspicuously absent from the New York Times piece.
The Missing Voices
Linda Andre, who received ECT in the early ’80s at the age of 25:
Before shock, patients are specifically told by our doctors that we won’t lose our memory, or that if we do, any permanent loss will be only for the time of the treatment itself, and that any other erased memories will come back. About permanent loss of cognitive abilities, doctors say nothing. Thus the double horror: having lives and abilities erased, not only without any warning, but after being assured that it couldn’t happen. And then when it does, the same doctors just keep assuring you that it didn’t happen.
As if we were so crazy that we don’t even know what we remember and what we don’t remember; I guess that’s what they think.
Here’s what was erased: most of the knowledge and skills accumulated during my college education, my college graduation, a graduation party no one else who attended it will ever forget, my entire relationship with the love of my life, the other important relationships in my life in whole or in part, my career as a writer and scholar, two foreign countries, trips to California, Vermont, Massachusetts, and possibly any number of other states, the reason for the end of a friendship with someone I do remember loving very much, the death of a friend’s brother, the location and contents of a safe deposit box to which I hold the key, and more, much more than I will ever know…
Shock bears about as much relation to gentle and gradual normal human forgetting as being killed in a war does to dying of old age. Shock kills memories blindly and randomly. It makes no difference how important the memory was in the first place, or whether it was a bad or good memory. You can’t get your memories back by tricks like going to the place where they happened. They don’t come back, ever…
One of the saddest things frequently said about survivors of ECT is that someone is ‘just never the same again.’ There’s even a name for this in the literature: the ‘taming effect.’ Whether or not it is possible to define exactly what’s missing, something essential to one’s humanity and personality – some part of one’s birthright – has been destroyed. Creativity is especially vulnerable. Shocked artists no longer create, musicians can no longer play. Spatial, mechanical, and mathematical abilities can be compromised. Each person will be most affected by the loss of what she valued most highly…
My life was stolen. No words can really describe it. Memory. Loss. Forgetting. None of them come close.
And somewhat more famously, Ernest Hemingway, who received ECT in 1961 and committed suicide shortly thereafter:
Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business? It was a brilliant cure but we lost the patient….
Sally Clay, who received ECT in 1967:
Nearly 20 years ago, I underwent 30 shock treatments at the Institute of Living in Hartford, Connecticut. As a result I lost two full years of memory. I have one child, a daughter, and the two years that were wiped out in my memory were the years when she was two and three years old; those memories are irreplaceable… My memories are clear and detailed back to the age of 2 and a half. But when it comes to those two critical years before I received shock treatments, my mind remains blank…
Doris Heikila, who received ECT in 1980:
It’s been 7-8 years since I had them [shock treatments], the long term damage is there and it’s not coming back… I can no longer fill out applications. I’m not able to retain anything I might learn, I read and the next minute it’s gone. I can’t follow written instructions, I become confused. Just the other day I had to fill out an application for Food Stamps. I couldn’t do it. I started to cry. Something so simple and it deals with current things, I just couldn’t handle it…
I feel doctors should tell people that are about to have ECT that sometimes, some of the brain is damaged and not all memory might come back. If I had thought for one minute I might of lost any of my memory forever, I would not of went through with it!
I’d also like to tell you that since the ECT I lost my first husband, I have hardly any memory of him, we were married 10 years.
I can no longer remember from day to day. When I’m lucky enough to find work, it’s mass confusion and I usually don’t last too long.
For more accounts of ECT from people who have experienced the therapy, check out the ECT 1st person project where hundreds of accounts are stored online in an easy-to-access format.