In the Safeway store at King Farm in Rockville, Maryland, there's a little table scattered with used books. For one dollar a book — the money going to charity — you can but mostly romance novels, ragged children's books with chewed-up edges, an occasional thin book in a language you probably don't recognize. This fall, I spotted a book that was not only hardcover but awesomely old, a 1938 edition. Because of the combination of its age, the topic, and the author, gently picking this book off the table was about as close to a religious experience as one could have.
Fifty years ago, a friend who was much smarter and far more widely-read than I, told me about a book she had read and loved that was called Microbe Hunters. I read it and loved it. It was strange for two teenaged girls in the early 1960s to love a book about scientific research ... or perhaps strange only for each to know there was another girl who felt that way. I loved it because its author, Paul deKruif, led me one tiny step at a time through the world of scientific discovery. I loved going into that world of focus, of mystery, of drama, of the drive to discover something that would help humankind. The mystery was not a small part of it for me. I had long loved Nancy Drew mysteries. Now, at 65, what am I? In part, a psychological researcher one of whose specialties is research methodology.
The book I found on that little table is deKruif's later book, The Fight for Life, is about what has absorbed much of my life since the late 1980s — the deprivation of people's human rights so that others may feel superior, amass wealth, or both...and doing it in the name of science. My particular focus has been on those who have been harmed as a result of being given a psychiatric diagnosis. The shock of hearing each new story of harm, and acquiring over the decades the knowledge of how common it is and how wide an array the forms of suffering because of being labeled, is intensified because of what I learned when I spent two years as a member of two committees that wrote the "therapists' Bible," the Diagnostic and Statistical Manual of Mental Disorders. I learned that, surprising as this will seem to many, the enterprise of psychiatric diagnosis is totally unregulated -- no regulatory entity of any kind oversees the creation and publishing of psychiatric categories, psychiatric diagnosis is not grounded in high-quality science, its use does not improve outcome (does not reduce human suffering), and it carries enormous risks of harm. The kinds of harm include but are by no means limited to the loss of custody of a child, a job, one's health insurance (or having skyrocketing premiums), and the right to make decisions about one's medical and legal affairs. People diagnosed as mentally ill often receive poor care for their physical problems, because their reports of physical symptoms are explained away as the imaginings of a disordered brain. Victims of sexual assault are too often pathologized -- often diagnosed with Bipolar Disorder, Borderline Personality Disorder, or both -- rather than receiving the respectful, compassionate care they deserve. As a result, their utterly understandable upset about having been attacked is used to "prove" that they are mentally ill. Furthermore, being diagnosed makes it easy for the perpetrator to claim that the victim imagined the attack, lied about it, or brought it on herself.
In the vacuum left where scientifically-grounded information ought to guide what we offer those who suffer there rush in every conceivable kind of bias, including but not limited to sexism, racism, classism, ageism, and homophobia. The combination of these biases and the deprivation of the human rights even of many white, wealthy, heterosexual, young or middle-aged men makes it all the more unconscionable that the United States Congress last week failed to ratify the international Convention on the Rights of Persons with Disabilities.
In The Fight for Life, DeKruif makes detectives of his readers, leading us through scientists' search for cures for childbed fever, pellagra, polio, tuberculosis, and syphilis, asking us questions that at first seem rhetorical: Did Dr. Elliott's remarkable discovery that a particular internal heat treatment saved phenomenal numbers of the lives of women who were dying of ? And as we, having read his descriptions of these cures, are thinking, "Oh, surely yes! How could it be otherwise?" He tells us we are wrong, then asks, "How could that be?" Money and power are usually the answers.
History shows that only with massive efforts has anyone persuaded most people to stop looking away from and stop ignoring altogether those who have visible physical disabilities and instead to recognize their humanity and human rights. As for people who have been diagnosed as mentally ill, to classify them that way makes it easy for those not so classified (or who have the power to keep their own diagnoses concealed) to maintain or grab the power to marginalize and oppress the former, to the point of depriving them of the most basic of human rights, as noted above. The consequences can be so severe — the ultimate one being death — that the staunch and tireless human rights advocate Tina Minkowitz is including psychiatric diagnosis in a document for the United Nations about deprivation of the rights of people given psychiatric labels.
Decades of circulating petitions and writing papers simply stating concerns about the lack of science and validity, as well as the harm, from these diagnoses have achieved little or nothing. The first known petition, which I started in the 1980s to protest the planned inclusion of Self-defeating Personality Disorder and Premenstrual Dysphoric Disorder (PMDD) in the then-forthcoming DSM-III-R, was signed by individuals and heads of organization totaling more than six million people, but though all of the documentation was sent directly to DSM-III-R head Robert Spitzer, the only -- canny -- step he took was to declare publicly that for the first time he was creating an "Appendix for Categories Requiring Further Study," in which those two labels would go. It was canny because (1)he still got them into the manual, (2)there was no warning in that appendix to say that there was no evidence that either label represented a real entity or that it ought to be called a mental disorder and therefore no professional should apply it to any patient, and (3)despite his public claim that they were only going in that appendix, PMDD also went in the main text that was allegedly for solidly scientifically-supported categories. He had similarly claimed publicly in the 1970s that homosexuality would not go in the next edition (DSM-III), but it did (Ego Dystonic Homosexuality), and even today, the category Sexual Perversion Not Otherwise Specified allows any therapist to decide on any basis that the patient in the consulting room is mentally ill in some way related to sexual behavior or thoughts or feelings.
A petition in which a gratifying number of mental health organizations or their divisions politely asked the editors of now-forthcoming DSM-5 to subject their planned contents to external review was at first ignored, then finally dismissed with a curt statement that they already external review. Yeah, sure. As I had seen since serving at the request of DSM-IV head Allen Frances as a member of two DSM committees in 1988-1990, they appoint people from outside their old boys' club, then ignore or distort what we say if it does not fit with what they want. (See http://www.psychologytoday.com/blog/science-isnt-golden/201105/what-psyc... and http://www.psychologytoday.com/blog/science-isnt-golden/201105/what-psyc... as well as many other essays on my Psychology Today blog for a wealth of examples that those preparing the next DSM). So I had been certain that the current chiefs of the manual would pay no more attention than had Spitzer or Frances when simply asked to be honest and to follow scientific standards, as well as warning of harm and trying to prevent it.
It was time for action, so earlier this year, nine people filed ethics complaints with the APA against the APA itself (publisher and beneficiary of the more than $100 million in profits from the current DSM) and the DSM editors and past and current officers who still belong to the APA. The complainants reported the terrible range of kinds of harm they had suffered because of being diagnosed. They had been going through difficult and upsetting times when they were labeled, but not every upset in life warrants the term "mental disorder," and according to the Americans with Disabilities Act, it is illegal to treat people who do not have disabilities as though they have disabilities as it is to fail to provide reasonable accommodations for people who do have them. The DSM and its sister, the International Classification of Diseases (ICD: published by the World Health Organization and being extremely similar in its psychiatric section to the DSM), powerfully promote the classification of virtually anyone with virtually any kind of feeling as mentally ill.
After the complainants were filed, the APA Ethics Department head Linda Hughes and APA General Counsel Colleen Coyle sent only a tiny number of communications, which I invite you to judge for yourself at http://www.madinamerica.com/2012/10/p20137/
In late October, the APA summarily dismissed all nine complaints in one brief, strange paragraph listing spurious or misleading "grounds" for dismissal and without having considered the merits of the complaints. Complainant Jenny McClendon's story is described at http://www.psychologytoday.com/blog/science-isnt-golden/201211/apa-does-....
The next action we took was that four of us, including Professor McClendon, went to APA headquarters on November 13, 2012, after repeated email requests in which I simply asked for an in-person meeting were ignored. Our aims were twofold: to ask in person for a meeting, believing in the importance of having those in power in the APA confront in person the full humanity of the complainants, and to deliver a document called "The Need and the 9 Demands," in which the Grassroots Group to End Harm from Psychiatric Diagnosis lists nine steps the APA can and should take even without considering the complaints. That document is in the article at http://www.madinamerica.com/2012/11/the-apa-refuses-to-listen-to-voices-..., and we urge you to copy it and circulate and post it as widely as possible, because you will see that the demands are utterly reasonable. The same article includes a step-by-step account of our rapid ejection from the building in which the APA is housed in Arlington, VA, after we were prevented even from taking the elevator to the 20th floor to ask for an appointment and deliver the document. One complainant, reading that account, called it "beyond Kafka and Orwell."
We are exploring other options for action, and as we develop them, that news will be posted at psychdiagnosis.weebly.com. For now, other people wishing to file complaints should send a request for how-to information through the Contact form at that site. The fact that the APA has dismissed the first nine complaints is no reason not to continue to file, and we have prepared a template in which complainants need fill in only a little information about their particular stories and a few other things. The template now includes the addressing of the "reasons" for dismissal that the APA sent to the first nine complainants.
At http://www.madinamerica.com/2012/12/reparations-it-is-conceivable/, Tina Minkowtiz argues that international law requires the payment of reparations. That is one of the nine demands in the document mentioned above.
"Watch the Stories of Harm the APA Refused to Hear" is a series of short videos stories of the complainants telling their stories. My introductory video in that series is at http://www.youtube.com/watch?v=9mihEgmfQKA, Jenny McClendon tells her story at http://www.youtube.com/watch?v=6vj4JzOBb88
Postscript: I finished reading the deKruif book after writing this essay, and there is a lesson in the fact that in the 1930s, deKruif was a journalist who advocated with special passion for the rights of especially the poor to all of the health-promoting help that scientific medicine could provide, yet he says some demeaning things about African-Americans even as he says some admiring and respectful things about them. Whether or not one is inclined to excuse the negative statements as being "of his era," they remind us that even those who are progressive and caring in some respects have room to be educated in the arena of human rights as history marches on, and may it march only forward.
This essay is part of a series, Blogging for Human Rights. Find out more:
©2012 by Paula Joan Caplan All rights reserved