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Archive for Sexology Original Paper: Leonore Tiefer, Ph.D. The Medicalization of Female SexualityThe 10/99 Boston conference
Text of my own Presentation in Boston: Leonore Tiefer, Ph.D.: The selling of 'female sexual dysfunction'Sexuality is changing, women's lives are changing, and this is a story of an important moment in both these sagas. I write this informal report for interested feminists and friends. I. Preparation New perspectives in the management of female sexual dysfunction," a conference on October 22-24, 1999 organized by Irwin Goldstein, MD , a highly visible urologist and erectile dysfunction researcher at Boston University School of Medicine (BU), had been advertised since early 1999, but it wasn't until July that I began to take it seriously. For too long I regarded Goldstein as largely a self-promoter, and although I knew there was major interest in women's sexuality from pharmaceutical companies capitalizing on the blockbuster success of Viagra, I didn't see much academic or scientific interest in the concept or the approach. I was wrong. Let it be a lesson to you - follow the money. By July, I realized that a big conference was going to happen, that a business meeting at the conference was probably going to convene a new scientific organization on "female sexual dysfunction" ("fsd"), and that feminists should be represented. The registration fee for the conference was $395 (for non-MDs), however, and the conference venue, the luxurious Swissôtel, offered rooms at $255 per night. Attending for any number of feminists seemed prohibitive. I made many phone calls and ultimately found an affordable hotel about a mile away. The program was filled with invited lectures by prominent sex researcher/clinicians (mostly Ph.D.s) such as Sandra Leiblum, Roy Levin, John Bancroft, Julia Heiman, and Ray Rosen, but several open sessions were planned for non-"invited" attendees to present short talks, with an August 15 deadline for abstracts. I worked hard to get feminists to submit conceptual critiques. Ultimately, there were seven. Mary Brown Parlee's described how "fsd" and "PMS" offered similar stories of medicalizing women's complaints. Marny Hall wrote on the complexities of sex therapy with lesbian couples. Lucy Candib's was on the dangers of quick fixes in family medical practice. Lisa Schwartz's was on family systems theories and sex therapy. Marian Dunn sent one in on how older women's desire needs to be primed by a partner. And my two abstracts were on "the selling of 'fsd'" and "norms and nomenclature." When the abstract deadline was rescheduled for September 15, I continued to urge the members of my expanding e-mail list (now including social scientists and academic feminists of all sorts) to think about coming to this event. But, the costs were exorbitant (including travel), and the fact that presentations would be limited to exactly seven minutes with three minutes for discussion was discouraging. Understandably, few feminist scholars wanted to attend. Even if they felt that giving a paper might make a difference, they were afraid they might die of boredom listening to a dozen papers on rat and rabbit clitoral tissue. But, really, it was the money. Follow the money. I decided to hold a free pre-conference discussion on October 21, the day before the BU meeting for local feminists to meet with those few of us planning to attend the BU conference and think through its political challenges and opportunities. A feminist minister friend, Tracey Robinson-Harris, got us space at the Unitarian-Universalist Association (UUA) headquarters on Beacon Hill, and through the summer and early Fall I urged feminists to attend this mini think tank. I have always been nervous about going to the media, because they trivialize sexuality and go for sensationalism. I also feared that going to the media would jeopardize my precarious insider/outsider status as a feminist sexologist. However, the BU conference needed to be seen from a feminist point of view, and I knew that BU's public relations department would be busy planting positive and self-congratulatory stories that might otherwise go uncontested. Over the summer, with much ambivalence, I contacted dozens of journalists. Judy Norsigian of the Boston Women's Health Collective offered to coordinate a press release, but I was reluctant to undertake such an activity. Gina Ogden, a Boston feminist sex therapist, put me in touch with Sojourner, a monthly women's newspaper based in the Boston area, and I wrote "FSD alert: A new disorder invented for women" , which appeared in the October issue and included my e-mail address. Two Boston artists offered to make a 6 foot tall papier mache model of a vulva to use in a public demonstration, but this seemed hilarious, but inappropriate. To my disappointment, no one else responded. Together with Carol Tavris, my good buddy and Los Angeles-based feminist social psychologist, I adapted the basic e-mail wake-up-and-smell-the-coffee message I'd been using for months to an op-ed format, and we peddled it to various newspapers. Ultimately, the L.A. Times published our Op-Ed, provocatively titled "Viagra for Women is the Wrong Rx," on October 20, the Wednesday before the conference. Bringing copies of the Sojourner and L.A.Times articles to Boston gave our presence and intentions credibility and self-confidence. II. The Pre-conference Planning meeting at the UUA The day long UUA planning session was full of intelligent and lively discussion of medicalization, racism, generational differences, doctors' egos, hotel architecture, professional careerism, the lures of industry, and, of course, sex. Nine women attended in addition to myself: Mary Parlee from MIT; Lianna Cassar, a Boston public health educator; Rebecca Plante, a sociology professor from New Hampshire; Valerie Orridge, a New York sex educator; Patricia Rackowski, a Boston menopause educator; Judy Peres, a journalist from Chicago; Meika Loe, a University of California sociology graduate student; Miki Wieder, a Cleveland sex therapist, and Gina Ogden, the Boston feminist therapist and author of Women Who Love Sex. Miki, Judy, Valerie, Meika, and I were registered for the BU conference. Our discussion focused on strategy - how to get our ideas across at the conference. I had prepared a page of "frequently asked questions [FAQ] about fsd" which presented many feminist arguments briefly, a short feminist sexuality bibliography, a feminist sexologist address list, and a cartoon from the current issue of Ms. on feminist-inspired supplements for Viagra-users. Plus we had the two press pieces. We discussed putting literature on chairs in the meeting room versus handing it out at different times and places throughout the conference. We didn't know the layout of the conference venue, however, or what we would be permitted to do. I phoned June Kevorkian, the BU Continuing Medical Education (CME) czar, who was in charge of making sure that CME programs were completely "clean," as she put it, free from commercialism of any sort. June vetoed literature on chairs or a special table for literature, saying that it might be thought the materials were from BU. It was a tense conversation, and by its end, I had no clear idea what we were going to do with our materials. We also discussed strategy for the conference business meeting called to discuss and vote on a new "fsd" scientific society. Goldstein had e-mailed strict rules for the meeting (no person speaks more than once, three minutes per speaker), and we struggled with how to maximize attention for critical points of view. Pat Rackowski suggested the best plan: try to have one microphone for "yes" speakers and another for "no" speakers, so that negative views would get at least half the time. A medical reporter from the Boston Globe, Delores Kong, had heard about the meeting from Sojourner, and we gave her 1/2 hour to ask us questions about our issues. She took copious notes, laughed at all the right moments, and we hoped something might appear the next day. Not everyone participating in the UUA discussion held the same perspective on "fsd" or the BU conference. Some were more into reform and influence from the inside, and others held a more radical analysis of the social and economic forces at work. But we were united in wanting to have women's voices present to challenge the assumptions and claims of well-fed and pharmaceutical-industry-encouraged doctors and scientists that their models and methods would doubtlessly benefit women and enhance their sexual lives. We had lots of doubts. Following the meeting, I ordered $140 worth of copies of our five main documents (Sojourner, L.A. Times, FAQ, bibliography, and address list). A charming Haitian named Weston promised to deliver them to the Swissôtel that night and Meika and I planned to pick them up at 6:50AM the next day. IV. The Friday morning conference kickoff We had a couple of lucky breaks. June Kevorkian is an exceptional conference organizer. However, she was a recent addition to the planning team for this conference, and had not picked the hotel. Thus, a ballroom with only one doorway in and out (for, ultimately, 461 registrants) was the meeting venue, a situation June said she never would have chosen. For our purposes, however, it was absolutely perfect. Meika and I distributed a blue FAQ sheet and the L.A.Times Op-Ed to every person entering the room starting at 7AM. (The actual conference sessions began at 7:30 each morning!) Second, there were dozens and dozens of people crowding the on-site registration table immediately adjacent to the ballroom. Our distribution activities were hidden from June and the other workers. As we handed out our blue and white sheets, we smiled, made eye contact, said a cheerful "good morning," and probably everyone who took our literature thought they were receiving something authorized by the conference - a late-additions bulletin of some sort or other. Many people nervously pinned on their conference badges, thinking that we were checking who entered the ballroom. Within a half hour, we knew people were reading our materials who never in a million years would have taken them from a literature table. We were ecstatic when someone showed us the morning's Boston Globe with Delores Kong's story about the pre-conference day, "Doubts heard over sexual dysfunction gathering". Meika went out at lunch and xeroxed 400 copies for distribution on Saturday. Contrary to my expectations, there was no exhibit area filled with the kind of huge drug company exhibits I had become used to seeing at erectile dysfunction conferences. No Viagra-shaped candies, no penile-injection-shaped pens, no free bags and cups with drug names and company logos all over them. June Kevorkian explained to me that the CME rules specified that if drugs were not FDA-approved for treating particular disorders, you couldn't exhibit them at an official CME meeting. And nothing is yet approved to treat "fsd." There was a decorous sign at the door to the ballroom listing sixteen "commercial supporters" of the conference divided into "diamond, platinum, gold, and silver" levels of support. I learned that the diamond class members, Pfizer and Schering Plough, each gave the meeting $20,000, and that every donor got one free registration. There were lots of industry people at the conference, and at one point during the drug trials session on Sunday, when the very savvy FDA person asked for a show of hands of who was not an "industry person," about half the room kept their hands down. Thirteen "Grand Master" lectures on "fsd" were presented throughout the conference, plus 33 brief presentations and 51 posters. I can't summarize them, but lengthy abstracts were published in the glossy 155 page conference program, and copies are still be available from BU CME (cme@bu.edu, or 617-638-4605). Most, but not all, explicitly or implicitly endorsed the three-stage "desire-arousal-orgasm" model of sexual function (absences or inhibitions of the various stages being called "dysfunctions") which has been promoted for the past twenty years in sequential editions of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM). Sexual pain is also a category of dysfunction, but there was controversy about whether genital pain during coitus is really a pain disorder (like back pain during sex would be) and not a "sexual" disorder at all. Everything nowadays is a disorder of some sort. Classification systems of sexual disorders were promoted as necessary for communication among researchers and clinicians, despite repeated acknowledgments of the dangers of stigmatization and negative labeling. Feminists heard many of our political issues raised, as when Grand Master Sandra Leiblum acknowledged that the DSM-model is heterosexist and based on a phallocentric coital norm. However, repeatedly, the experts claimed that there was no alternative model of sexual function available. Leiblum reported that an an attempt had been made to add a new diagnostic entity to the scheme, "sexual satisfaction disorder," to reflect women's greater concern, as shown in many studies, with emotion and relationship than genital response in terms of their overall sexual satisfaction. However, the suggestion was defeated as it seemed to raise more problems than it solved. Instead, a requirement that each genital dysfunction cause "distress" was added. A woman would only receive a diagnosis of orgasm disorder or arousal disorder, for example, if she were distressed about her lack of orgasm or arousal, thus seeming to avoid stigmatizing women without orgasm or arousal who didn't care. To a feminist, this solution wouldn't avoid stigma at all (look at the struggles of the "fat liberation movement" for example). Classification difficulties were of less interest to most attendees than scientific research on the physiology of women's genital function, and how that physiology changes with various diseases, with aging, and in response to drug treatments. Grand Master lectures were at a highly technical level, so mental health clinicians who had no idea of spinal cord physiology were as often in the dark as physicians who knew nothing about cognitive behavior therapy. An equal number of lectures were allotted to psychological and physiological subjects, but many people were disturbed by the fact that no questions were permitted after the lectures. Our seven feminist abstracts were all accepted (all abstracts were accepted), although four were scheduled as posters. Marny Hall's lesbian sex therapy paper, Mary Parlee's "PMS and FSD" comparison, and mine on "the selling of sexual dysfunction" were scheduled for the seven minute podium talks. Mary couldn't imagine presenting her ideas in seven minutes and chose not to attend. Of the 33 podium papers and 51 posters, many reported drug experiments with small samples (and no control groups), some described new measures of women's genital response (using tiny thermal probes or vibrators attached here and there), and some were concerned with various treatments for genital pain during sex. Only one directly addressed the impact of socioeconomic issues on sexuality, and that one predictably showed if you pay women volunteers $200 they are likely to volunteer to complete sex research questionnaires. There was nothing on ethnic issues. On Friday, Meika read Marny Hall's paper on lesbian sex therapy, and got a respectful hearing, though many in the audience couldn't grasp the notion of "narrative" therapy in seven minutes. The last two Grand Master lectures on Friday, right before the business meeting, were by longtime sex researcher/clinicians John Bancroft (now Director of the Kinsey Institute) and Julia Heiman (whose psychophysiology study in the 1970s on discrepancies between women's genital arousal and subjective self-reported arousal in response to erotic materials is probably the ur-text of the "fsd" field). Bancroft was particularly cautionary, advising "fsd" researchers to "take seriously" the "outrage among feminist scholars" provoked by medicalization. He advised caution in research, hoping it wouldn't "reinforce the mind-body dualism that is so rampant in the medical world"), caution in nomenclature ("the translation of 'sexual problem' into 'sexual dysfunction,' with all the medical connotations of that term, while problematic with men is much more so with women"), and caution in drug development (hoping it wouldn't "undermine the need to keep in mind the broad social and psychological factors impacting the human sexual experience"). VII. The business meeting and the vote Friday afternoon, about 150 of the attendees stayed to discuss whether there should be a new "fsd" organization, and, after some bickering, Goldstein accepted our idea of "pro" and "con" microphones. Predictably, several speakers spoke from the middle of the room, proclaiming themselves ambivalent. The debate was friendly. The pro side emphasized "res ipsa loquitur" (a Latin legal term meaning "the thing speaks for itself) - over 400 people had come to the Swissôtel because they were interested in "fsd." A new society would offer opportunities to present research and share clinical experience. What could be wrong with such a plan? The con speakers were more diverse. Valerie made her statement about exorbitant conference costs excluding minorities and non-affluent providers. Urologists said that the Society for the Study of Impotence had changed its name three weeks earlier to the North American Society for the Study of Sexual Function and that its meetings could easily incorporate research and clinical work on women. Sexologists said that there already were a half dozen sex research organizations and journals and why didn't the new "fsd" energy locate within sexology instead of creating a lot of competition. The vote by secret ballot was 124 in favor of a new organization, 59 against. But they had heard Valerie, and when the discussion turned to next year's meeting of the new "Female Sexual Function Forum," they agreed that cost should be an issue. They also agreed that the meeting should again occur under CME sponsorship, precluding crass forms of commercialization. The Sunday discussion of drug trials had a very different tone, but I am getting ahead of the story. The next day, Saturday, Meika and I decided to hand out the Boston Globe article as people returned from the mid-morning coffee break. We also put piles of the feminist bibliographies and feminist address lists on various tables. By this point in the conference, lots of literature was appearing on the tables advertising books, jobs, conferences, sex therapy programs, etc. There was a comprehensive Grand Master lecture on sexuality and breast cancer by Milan gynecologist Allessandra Graziottin. Vivian Pinn, M.D., the current Director of the NIH Office of Women's Health (founded in 1990) talked of her somewhat abashed realization that in her six volumes of testimony about the gaps in knowledge about women's health, there were only three sentences about sex. However, when she said her office had no money, and was only into "setting an agenda," people seemed to tune out. I am appending my 7 minutes of remarks to this report for those of you who might want to wade through them. Suffice it to say that in "The selling of 'fsd'" I emphasized the complexity of women's sexuality and the temptations to oversimplify it resulting from the medical model and commercial pressures. There were 2 critical response to my remarks. One woman said, at great length, that I was inexplicably "intense," and wondered why I didn't just wait to see how things developed. The other, a Grand Master lecturer herself, said I didn't speak for her, she didn't really know what a feminist was, and that Irwin was doing a great thing by opening up this new area. I felt a generational chasm open up between us. The other questioner said he agreed with my warnings about commercial temptations, but that the "Freudian error" had been made for too long and the psychology of sexuality was not that central to women's sexual problems. I replied that I had a feminist resource list and bibliography and looked forward to continuing the dialog during lunch and afterwards. In fact, a table of ten rapidly formed during lunch, and several sex therapists from Minneapolis were particularly caustic about the medical bias of the meeting and their frustration at the lack of opportunity for questions. After lunch came the lengthy poster session. Of our original four feminist posters, (Candib, Schwartz, Dunn, and myself), only Lisa Schwartz and myself actually brought conceptual posters to discuss. By that time, media were quite visible, and I spoke with reporters from New England Cable News, Newsweek, The Chicago Tribune, Salon internet magazine, and two freelancers. One of the freelancers was very excited because she had just gotten a call from a Japanese medical newspaper! One could see the media explosion on this subject unrolling into the future. Sex and pregnancy. Sex and cancer. Orgasm and aging. Lubrication and seasonal affective disorder. Sex creams, pills, patches. New vaginal bloodflow probes suitable for premenopausal or postmenopausal women, new clitoral thermometers....... Sunday brought two lengthy sessions. In the first, brief case vignettes were presented to the audience such as the following: JL is a 47 year old woman who underwent a mastectomy followed by Tamoxifan chemotherapy for treatment of locally infiltrating breast cancer 3 years ago. Since then, she has experienced decreased libido, lubrication difficulties, loss of genital sensation, and difficulty achieving orgasm, both alone and with a partner. She was divorced nearly 2 years ago because of relationship and sexual difficulties, due in part to the stress of her cancer treatment and its afternamath. Now, she is in a new relationshp and wants to experience better sexual functioning. Physical examination reveals mild vaginal atrophy and some genital tenderness, as well as some discomfort when the scar of her mastectomy is touched. She has low values of estradiol.The audience was asked to vote via electronic pushbuttons on possible etiologies and "management" strategies. There was lots of frustration with the technology, and lots of grumbling about the impossibility of making such decisions with such little information. The final session, during which there was no visible restlessness, was about clinical trials, i.e., drug trials, and in my opinion, it crossed over the line into drug promotion. Even June Kevorkian, the CME watchdog, wasn't happy about the session, and said that if the meeting were to occur again, she'd have it on a separate day with separate registration, so as to make clear that BU was not sponsoring a session with no scientific content. Nevertheless, the audience was very interested in hearing about how a new questionnaire on "fsd" was being tested, how to recruit patients and conduct clinical trials "in the private office setting," and about the challenges encountered in multicenter clinical trials (they're still arguing over the proper clinical endpoints - physiological vs. self-report). The FDA consultant, Susan Allen, said that as a woman, she believed that subjective endpoints were important, but that "wearing [her] FDA hat," subjective information could only be "supportive," and the "primary information had to be objective." This was a big disappointment to me and some other sexologists. During the brief (three speakers) question period permitted after the drug trials lectures, I decided to make one last political point. I reminded the audience of the recent exposè in the New York Times about the abuses involved in private practitioner drug trials, and asked the speaker on that subject to reveal the financial arrangements his group studying "fsd" had made with drug companies (the Times had discussed "bounties" which encourage rapid enrollment, pressuring patients, recruiting inappropriate candidates, etc.). He wouldn't answer the question and when I asked him again, Irwin said "if you want your question answered, you'll have to talk with the speaker after the meeting is over." Here are a couple of final thoughts.
Leonore Tiefer, Ph.D.: The selling of 'female sexual dysfunction'Why would I choose this title and topic for a talk to this group? I come here as both a physiological sex researcher and a clinical psychologist for the past 30 years, and as a member of what Dr. Pinn characterized as a member of "the women's advocacy community" - a feminist. I wanted to bring that special insider/outsider perspective and message to this conference because we are at an important point in the history of sex and the history of women. You gathered here have an opportunity to make substantial contributions to the ongoing story of women's sexuality. But, as a sexologist and as a feminist I am concerned that you may not succeed in avoiding the temptations of simplistic models and solutions for women's very complex sexual dilemmas. I am especially concerned because of the history of "erectile dysfunction." [Wave around the 1992 NIH consensus report on Impotence!] I don't want to happen to women's sexuality what happened to men's sexuality at this 1992 meeting. I don't want to wake up and find a report like this on women that is so limited and biased. I participated in that conference and saw how it operated, and I am determined that this sad chapter should not be repeated with women. Most people, including sex researchers, are afraid to look too closely at the psychology of sexuality. We protect ourselves with questionnaires and standardized language. We are still embarrassed to fully admit what we do sexually, what we feel, and what we want. Even worse than admitting these things would be understanding them, understanding how eroticism is connected to deeply personal longings for affirmation, avoidance of inner doubt, the need for power and a secure sense of identity. It's face-saving for us and for our patients to talk about sexual arousal and desire as if they were natural and universal, spontaneous and standardizable. But our desires for expression and affirmation are ultimately unique; our desire for an orgasm, for example, is as often for a feeling of connectedness and vitality as it is for release of pelvic tension. But it's not just sexual psychology that people resist looking at too closely. There's sexual culture, too, especially the workings of gender as a major element in sexual culture. The history of women's sexual experiences across cultures and centuries is the story of overt suppression and internalized suppression - of having one's birthright of pleasure and pride stolen by a society or a family or a husband. As a feminist, I am shocked when I hear the repeated claim that there's been no research on women's sexuality. There are truckloads and warehouses full of research on women's sexuality detailing the multiple methods and sources of this external and internal suppression. Do you wonder why feminists like Judy Norsigian of the Boston Women's Health Collective are so ready to express their worries about this conference in the Boston Globe? For 25 years the women's health movement and the feminist therapy movement have perfected treatments of women without orgasm, of women recovering from sexual abuse, of the widespread shame and inhibition of this suppression. Many of us in this room are the direct sexual beneficiaries of the women's liberation movement - now, there's outcome data for you! Sexual benefits to women are ubiquitously promised by many sectors of society, especially those which stand to make a profit - wear these clothes, use this face cream, swallow a few of these pills. Let me remind you that women started not only the women's liberation movement, but the consumer movement. We're a skeptical bunch, and the new "fsd" initiative will have to prove its good intentions are more than just rhetoric. So, perhaps this helps explain to you why I and some of my sister feminists have taken what might seem like an extraordinary and audacious step of using the press to put some political pressure on this meeting to live up to its potential, and not just to represent multidisciplinary window-dressing for either commercial interests whose only goal is profit or careerism uninformed by a larger vision of women's social predicaments. So, as a feminist and sister researcher, let me call on you to include these five issues in your research:
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