Who Will Protest Against the DSM Harm?
Integrity, Concern, and Action is needed for DSM Protest
by Paula J. Caplan
The good news: More people than ever before are learning that psychiatric diagnosis is not grounded in good science and causes a vast array of harm to people who have turned for alleviation of their suffering to those who are called helping professionals. The bad news: The forces keeping the psychiatric diagnosis juggernaut rolling and misleading the public are more powerful than ever.
I have written about these concerns here before, as well as elsewhere (They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal and Bias in Psychiatric Diagnosis, as well as at psychdiagnosis.net), so I will not repeat most of what I have already said. Today I focus on the danger of assuming that organized protest against the Diagnostic and Statistical Manual of Mental Disorders (DSM) is well in hand and likely to be effective in stopping the harm. There is no reason to believe that this is the case.
You may have heard about the petition started by several divisions of the American Psychological Association, who express concern about possible harm to children, adolescents, and the elderly and ask for an external group (the DSM is published by the American Psychiatric Association) to evaluate the proposals for the next edition, called DSM-5. This petition has garnered thousands of signatures and the support of additional American Psychological Association divisions. Although it is wonderful that these brave divisions have at last spoken out about the devastation caused to untold numbers of people over the many decades of the DSM’s existence, it is stunning that they would specifically omit mention of harm to adults who are not elderly. When I wrote petition coordinator David Elkins to inquire about this, he did not respond to the question. (Note added December 19: Please see in Comments section after this article that Dr. Elkins has now responded there to the question I had emailed him about this awhile back. I am delighted to hear that his group is also concerned about adults who are not elderly, and I hope they will take pains to make clear in the future that they are concerned about everyone who has been hurt by psychiatric diagnosis. This does not change the other concerns in this essay, and in his comment here below, Dr. Elkins did not address those.) It is hard not to wonder whether this is due to the association of Allen Frances with this petition.
Former Psychiatric Manual Chief Demonizes Those Hurt By His System
Frances, the psychiatrist who headed the work on DSM-IV – on which I served as a member of two committees before resigning in horror at the way they ignored, distorted, and even lied about the scientific basis for their diagnoses – recently wrote in an article called „The user’s revolt against DSM-5: Will it work?“ in the November 10, 2011, Psychiatric Times that he was worried that the „harmful anti-psychiatry movement“ would damage this petition campaign. He pointed out that, although „DSM-5 is such a mess,“ nevertheless, psychiatry „is essential and extremely helpful – DSM-5 is nor more than an unfortunate and temporary aberration.“ His intense need to defend and protect psychiatry in general is clear.
I simply could not believe my eyes when I read Frances‘ opening statement in that article. He wrote: „When it comes to DSM-5, experience has proven conclusively that the American Psychiatric Association (APA) will not attend to the science, evaluate the risks, or listen to reason. A user’s revolt has become the last and only hope for derailing the worst of the DSM-5 suggestions.“ I thought of the many years during which he steadfastly ignored the questions that were raised about the woeful state of „science“ in his edition of the DSM, his dismissive attitude when concerns were raised directly with him about the patients whose lives had been ruined because of psychiatric diagnosis, and his claim, when asked, „Is there at least some evidence that more people have been helped than harmed,“ that „Well, of course there’s no way of knowing that.“ Hardly the response of someone who understands that science is useful in answering exactly such questions.
Frances‘ disdain for those adults (who include some proportion but by no means the majority who are elderly members) who joined the anti-psychiatry movement because they were so profoundly harmed by the traditional mental health system is revealing…and terrifying. Are the only good ex-patients those who stuff deep inside themselves the ways the system hurt them? And I have to wonder, does he not grasp the point that, even though he believes the anti-psychiatry movement is harmful, he might want to refrain from publicly tarring a movement that includes such sterling organizations as MindFreedom International, The Icarus Project, PsychRights , the National Empowerment Center, and the International Society for Ethics in Psychology and Psychiatry (which includes some survivors as well as some professionals)?
This would matter less if the APA petition had a prayer of leading to change. I fervently hope I am proven wrong, but here are two of the major reasons for doubt:
(1) In the mid-1980s, beginning at the Association for Women in Psychology conference, I coordinated the first petition campaign in which any DSM categories were challenged. This was in regard to then-forthcoming DSM-III-R, whose Task Force was headed by Robert Spitzer, who is now, like Frances, suddenly speaking out about the lack of science and the harm from psychiatric diagnosis. Did they suddenly discover this once they were no longer in command of the manual? Our 1980s campaign ultimately netted signatures and letters from individuals and organizations representing more than six million people (in contrast to the thousands so far signing the Elkins petition), but that did not stop the DSM authors from steamrolling ahead. And it certainly did not stop Allen Frances from including in his edition, DSM-IV, categories that he knew had led to harm. How do I know he knew? I told him in a telephone conversation, and I sent him documentation of harm. If another major lobby group, the American Psychological Association, which long ago raised serious concerns about the DSM but now refuses to challenge it as a body (hence the courage of those of its divisions that started this petition) and in fact profits from offering Continuing Education courses about the DSM that lack critical components, would get on board with any anti-DSM petition, that would carry considerable weight. Up to now, they have refused to do so. In a recent press release (December 2, 2011), they stated that any psychiatric classification system „must be based on the best available science and serve the public interest.“ The disingenuousness of that statement is striking, given that unless they have spent many decades under a rock, they know full well that the DSM is unscientific and causes harm. Furthermore, according to the press release, they share the belief of the petition’s authors that „the purpose of any diagnostic classification system should be to improve treatment outcomes.“ Yes, it should be. But as I have learned through reading the research, diagnosis of mental disorders does not help (except to get insurance coverage, and I have a proposal for how to deal with that), does often cause harm, and does not correlate with outcome. We learn from the press release that the American Psychological Association has „called upon the DSM-5 Task Force to adhere to an open, transparent process based on the best available science and in the best interest of the public.“ They might as well shut themselves in a closet and whisper that request.
(2) So many powerful systems have a stake in maintaining the fundamentals of psychiatric diagnosis that it strains credibility to think that the DSM-5 heads would turn over the evaluation of their work to some outside group. Historically, under Spitzer and Frances, the DSM chiefs boasted about „consulting“ with many hundreds of professionals (note: they included hardly any, if any, people who had been patients in their system) in constructing their manuals, but I know from my experience and the experiences of others that they compile an impressive list of all these consultants but freely reject any opinion that goes against their aims, no matter how grounded in science and/or humane concerns those conflicting opinions might be.
Concerned about all of the above, a number of organizations and individuals recently formed the PLAN T Alliance (Psychiatric Labeling Action Network for Truth) and decided that it is time to stop asking the DSM heads please to listen to reason, to look at the science, and to consider the ways diagnosis hurts people. Instead, the PLAN T Alliance decided to take action. Two actions are for those professionals who use the DSM to boycott it and for Congressional hearings about psychiatric diagnosis to be held. The federal government through Medicare, Medicaid, the military, and Veterans Affairs relies heavily on the DSM, as do many hospitals, clinics, and other practices, which is the reason for the focus of the boycott on the DSM. This should not be taken to indicate that the International Classification of Diseases (ICD), which also includes some psychiatric categories, is based on science and does not cause harm. But the initial target of the boycott is the DSM, because it garners huge profits for the American Psychiatric Association, which is actually a powerful, wealthy lobby group. It remains to be seen what is done with the profits from the ICD, but perhaps its publisher, the World Health Organization, uses them for compassionate purposes.
The rationale for calling for Congressional hearings is that no entity regulates psychiatric diagnosis, and because of its lack of scientific basis and the harm it causes, we need a national airing of whatever anyone would like to say about it. Those who report feeling relieved to be given a label for their suffering can testify, as can those who report that they were harmed. (The former ought, however, to be given the option of hearing from us, „We will listen to you and believe that you suffer and will try to help you without requiring you to accept a psychiatric label.“). And this would lead to a national conversation about how to prevent the harm and still provide help and support for those who suffer. (Many such ways are already known, of course.)
The PLAN T Alliance petitions are:
Boycott the DSM
Call for Congressional Hearings About Psychiatric Diagnosis
Another kind of action, one in which anyone can take part in various ways, is MindFreedom International’s „5/5 Against DSM-5,“ a protest that will take place in and around May 5, 2012, in Philadelphia, when the American Psychiatric Association will vote on whether to accept the proposed contents of DSM-5 and send it to press. MFI will have space near the convention for people to assemble to make speeches, do performances, and there will be events right in front of the convention area itself. Information will increasingly appear on the MFI website at http://mindfreedom.org/
My own view, first expressed in 1995 in They Say You’re Crazy, has long been that lawsuits would potentially be the most effective way to stop the harm from psychiatric diagnosis. In a later essay, I may write further about this.
In the meantime, it remains to be seen whether the APA divisions‘ petition or the abovedescribed kinds of action will be effective, but not to act is to be complicit with the destruction of people’s liberty, health, and peace of mind through psychiatric diagnosis.