The Politics of Diagnosis and A Diagnosis of Politics

Originally appeared in Transgender Tapestry #098, Summer 2002

The University-Affiliated Gender Clinics, and How They Failed To Meet the Needs of Transsexual People

by Dallas Denny

? 1991 by Dallas Denny

When the Christine Jorgensen story made headlines in 1952, she and her physicians were immediately deluged by frantic requests from hundreds of men and women, pleading for a sex change (the term sex reassignment had not yet been invented). There was little Jorgensen or her doctors could do, however, for her surgery had been one of a kind. It was considered highly experimental, and its morality and legality were being hotly debated in the pages of medical journals. Her physicians were not prepared to do further surgeries (or at least not more than one or two), and no one else was in the sex-change business.

But Pandora?s Box, once opened, refused to be closed. Transsexual men and women sought and sometimes obtained hormonal sex reassignment from sympathetic physicians (the most notable of these being Dr. Harry Benjamin, in New York City). Some went abroad, to Copenhagen and Casablanca and other places, for sex reassignment surgery (SRS). A few submitted to the coat-hanger-in-the- back-room equivalent of transsexual surgery, placing themselves in the hands of inexperienced doctors and non-doctors who promised vaginas or penises and delivered death and disfigurement.

With increasing numbers of transsexual people requesting sex reassignment, and with more and more men and women with botched surgeries presenting for corrective procedures, it was inevitable that SRS would become available in this country. The circumstances of the foundation of two of the first three gender programs

in the U.S. are detailed in Green & Money?s 1969 text, Transsexualism and Sex Reassignment. At Johns Hopkins, several surgeons were curious about SRS (one had already performed two such procedures), and in fact may have seen the issue as primarily one of professional ?turf?:

Among those willing to investigate the sex-reassignment procedure as a method of therapy for a specific psychopathology were surgeons for whom this represented a unique experience and challenge to perfect techniques heretofore restricted to the treatment of congenital malformations, and traditionally the province of the urologist and gynecologist, rather than the plastic surgeon.? (Money & Schwartz, 1969, p. 255).

The other two centers were at the University of Minnesota and at UCLA. The personnel at all three clinics wished to avoid publicity, but that was not to be. Even before its clinic officially opened in November, 1966, word went out that the prestigious Johns Hopkins University was doing sex reassignment surgery.

The existence of a gender clinic at Johns Hopkins served to legitimize the surgical treatment of transsexual people. In the late 1960s and early 1970s, similar clinics sprang up across the United States. Most were affiliated with universities with medical schools: Vanderbilt University in Nashville, the University of Virginia in Charlottesville, Stanford University in California, Duke University in North Carolina, and others. A few had other affiliations?for instance, there was an experimental program at Georgia Mental Health Institute in Atlanta, which apparently had ties to Emory University. Soon, there were more than 20 of these programs in the United States and Canada. Most were staffed by men and women with no special knowledge of or training in transsexualism?this is not surprising; there were, after all, no doctoral training programs in gender dysphoria? but more than a few workers had little training in human sexuality or gender issues. In some cases, one or two people simply decided that they were interested in doing research on transsexualism and persuaded others to throw in with them. For example, Leslie Lothstein, who has authored innumerable articles and a textbook about transsexualism, wrote,

?... My initial involvement with transsexual research began quite fortuitously. By chance a colleague, Dr. Stephen Levine, asked if I would evaluate psychologically an aging heterosexual man who wanted to change his sex.? (Lothstein, 1983, pp. 86-87).

Lothstein and Levine started a study group, and, subsequently, the Case Western Reserve Gender Identity Clinic was formed.

Transsexualism was a newly-discovered phenomenon, and its treatment by hormonal and surgical means was a radical departure from ordinary therapies, for in no other ?illness? was the body changed to fit the mind. In addition to being highly controversial, SRS had no track record. Although a large number of operations had been done overseas, it was still considered by the men and women of the clinics to be an experimental procedure, to be done to a small number of people under carefully controlled conditions (cf Stoller, 1973).

Consequently, the clinics were small, designed to treat low numbers of transsexual persons, with extensive follow-up. The famous clinic at Johns Hopkins, for instance, limited its evaluations to two per month. The clinics were totally unprepared to deal with the vast number of persons who presented, requesting sex reassignment.

From a treatment point-of-view, the large number of applicants was a nightmare, but from a research perspective, it allowed the clinics to be choosy. They could afford to be?and were? selective in whom they chose to serve. Their requirements were often excessive, as illustrated by the selection criteria of the Case Western Reserve Gender Identity Clinic, which accompany this article.

The clinics were nonetheless a bright and shining hope for thousands of men and women who were unhappy in their assigned gender. They applied in droves, often driving or flying long distances and spending hundreds of dollars to be evaluated. But most were disappointed. They did not get sex reassignment surgery from the clinics, did not get hormones from the clinics, did not get good advice from the clinics, and in most cases, did not get (or were not told about) a diagnosis from the clinics.

The primary mistake transsexual people made was in considering the clinics as treatment centers, when they were in fact experimental in nature.

The primary mistake the clinics made was in blindly pursuing their research goals, not taking into consideration the human needs of the thousands of desperate people who came to them for help.

The remainder of this article is not meant to be a blanket condemnation of the university-affiliated gender clinics. Many were staffed by highly competent, caring professionals who delivered quality treatment, and who published scores of insightful articles in medical journals. These people, and their clinics, dealing with a phenomenon which was newly discovered, and about which next to nothing was known, built a knowledge and treatment base of transsexualism, making significant strides in all areas. When the dust had cleared, transsexual people were left with legitimization in The Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association (DSM III), with the Standards of Care of the Harry Benjamin International Gender Dysphoria Association, Inc. (Berger, 1980), with advances in theory, surgical treatment, and hormonal therapy, with better, less biased definitions and descriptive terminology, with studies of the prevalence and etiology of transsexualism, and with studies of the outcome of sex reassignment surgery. And they did provide relief for hundreds, if not thousands, of transsexual people. But the bitter experiences of thousands of transsexual men and women are an indictment: something was wrong.

What I have written is not true of all the clinics, or of all the workers in any clinic, but what I have written is what was experienced by thousands of American men and women. I have heard their stories again and again. To my knowledge, the clinics have never been taken to task. It is a task long overdue.

Getting (And Being Denied) Treatment in the Gender Clinics

The clinics viewed sex reassignment as a last-ditch effort to save those with whom other therapies and interventions had failed. Those who were accepted for treatment were often prostitutes, had substance-abuse problems, were sociopaths, were schizophrenic, or were profoundly depressed or suicidal. They and others who were considered ?hopeless??i.e., were likely to die, anyway?were accepted. It was a classic misapplication of the triage method, with those most likely to benefit from intervention being turned away, and the terminal cases receiving treatment.

The men and women who worked in the clinics were prone to assume that anyone whose presentation was not strikingly that of the gender of choice were not good candidates for SRS (see Stoller, 1973), and probably were not transsexual. Assuming the converse resulted in the acceptance of flocks of drag queens and street hustlers, who were generally skilled at appearing as women, but who often were not transsexual.

Those whose presentation was not convincingly that of the gender of choice were especially unlikely to obtain treatment, for the general consensus was that appearance was predictive of success in reassignment, and that those who were able to achieve a convincing presentation in their original gender would be unable to pass successfully after reassignment?or were not truly transsexual. ?Most who were rejected for surgery looked like men trying unsuccessfully to imitate women.? (Stone, 1977). The clinics naively overlooked the fact that those who passed often did so only because of having previously (and often illegally) taken hormones. Others were labeled ?fetishistic crossdressers? or ?secondary transsexuals? (Person & Ovesey, 1974) and denied treatment.

The clinics? notions of ?passing? were simplistic and sexist. They forced unrealistic stereotypes of femininity and masculinity on transsexual men and women (Bolin, 1985; Raymond, 1979). The drag queens were the unfortunate standards for comparison. Those who were not Marilyn Monroe burlesques of womanhood (or John Wayne parodies of manhood) were ?not transsexual.? Those who did not dress seductively and sexily or otherwise subscribe to the stereotypes, or who were naive or foolish enough to show up for evaluation not looking like Jayne Mansfield were rejected. Presenting as what one actually was, rather than what one hoped to be, was a sure way to be denied services. Kessler & McKenna, as quoted in Bolin, reported ?that one clinician ?said that he was more convinced of the femaleness of the male-to-female transsexual if she was particularly beautiful and was capable of evoking in him those feelings that beautiful women generally do. Another clinician told us that he uses his own sexual interest as a criterion for deciding whether a transsexual is really the gender she/he claims.?? (Kessler & McKenna, 1978, p. 118; Bolin, 1988, p. 107).

The clinics subscribed to ?man trapped in a woman?s body? notions of transsexualism. Transsexual people were considered to be a homogenous lot. Those men who had not played with dolls in childhood, who did not report feeling like a girl from the earliest age, or who had any history of enthusiasm for or success at masculine activities were in trouble. So were women without an early history of extreme tomboyism.

Despite the heterogeneous nature of the population presenting for treatment, the clinics did not change their notions of transsexualism; instead, they diagnosed large numbers of transsexual people as nontranssexual (or withheld diagnosis), and wrote journal articles about the characteristics of nontranssexual people who presented for sex reassignment (cf Newman & Stoller, 1974).

Men and women who were reasonably normal or showed signs of being well-adjusted (apart from their transsexualism) were unlikely to be served. Being able to hold a job in the gender of original assignment, having obtained a higher degree (or even a high school diploma), having a past history which included heterosexuality (and especially marriage or children), having a feminist or lesbian orientation (for male-to-females), having past or present interests which were not stereotypically that of the other sex, having career goals which were not traditionally sex-typed, admitting to an adolescent genesis of feelings of gender dysphoria or a past history of sexual arousal when crossdressed?these were the kiss of death. Not subscribing to the ?party line??the expectations of caretakers?was a sure ticket to the revolving door.

Not surprisingly, transsexual men and women learned to present themselves in the ways the clinics expected. Of course, the clinics took this as corroboration that transsexual people had rigid and stereotyped notions of femininity and masculinity, had childhood onset of feelings of gender dysphoria, and did not show prior heterosexual adjustments. Reports to that effect flooded the literature, influencing workers at other clinics. Workers looked for presentations predicted by the literature, and transsexual people, who are notorious readers of medical journals, gave the clinics such presentations?and were accepted for treatment.

It was not until 1988, with the publication of Anne Bolin?s book, In Search of Eve: Transsexual Rites of Passage, that the myths were shattered. Bolin found that the mode of dress and presentation of the group of transsexual women she studied was as varied as that of any other group of women, and she revealed the cycle of caretaker expectations/transsexual presentation for what it was:

The preoperative individual recognizes the importance of fulfilling caretaker expectations in order to receive a favorable recommendation for surgery, and this may be the single most important factor responsible for the prevalent mental-health medical conceptions of transsexualism. Transsexuals feel that they cannot reveal information at odds with caretaker expectations without suffering adverse consequences. They freely admitted to lying to their caretakers about sexual orientation and other issues.

Although caretakers are often aware that transsexuals will present information carefully manipulated to ensure surgery...they have only to scrutinize several of their most prominent diagnostic markers available in the literature to realize the reason for the deceit. If caretakers would divorce themselves from these widely held beliefs, they would probably receive more honest information. (Bolin, 1988, p. 63, emphasis mine).

Bolin points out that the client-practitioner relationship was severely damaged by the manipulations of information and appearance that transsexual people felt they had to resort to in order to obtain treatment.

The Problematic Behavior of ?Transsexual? People

The middle-class values of the clinicians were rarely reflected by the street queens they served. Inappropriate behavior was the norm, as illustrated by the following:

The severity and intensity of some patients? psychopathology and acting out were . . . revealed within the group, for example, two members brought loaded guns into the group (One member had to be forcibly restrained from using it!); auto- and mutual masturbation; exposure of breasts; an attempted kidnapping; several near-violent confrontations among group members which carried over outside the group (in which patients threatened each other physically and one patient drew a knife); innumerable sexual overtures to the therapists; patients bringing in pets (two dogs and a menagerie of land crabs); serious psychosomatic symptoms (including ulcerative, arthritic, hyperventilative, and cardiac distress). (Lothstein, 1979, p. 73.)

Most of our surgically treated patients had a long history of arrests and convictions for minor nonviolent crimes, especially prostitution... In addition to a long history of petty criminal offenses, they dressed in dramatic seductive fashion, passed convincingly as women, had a history of passive participation in homosexual activity, and seemed to have fully adopted the feminine gender role late in adolescence. In addition they were manipulative, demanding, and therefore troublesome in their behavior... Most of the patients in our series had histories of having taken drug overdoses and some had been hospitalized psychiatrically during their turbulent years preceding and just after beginning to live fulltime in the feminine role. (Stone, 1977, p. 26.)

Lothstein, Stone, and others did not consider that their naive and biased selection criteria, which were predicated on bizarreness, were a veritable recipe for erratic behavior. Consequently, the literature came to be filled with journal articles which alluded to the outlandish and grotesque behavior of ?transsexual? persons and to their various additional psychopathologies. Many of these articles were little but excuses for name-calling.

SRS or Else

The directors and staff of the clinics tended to view SRS as essential for satisfactory adjustment in the new gender. They did not seem to realize that it is possible to live as a woman or a man without the expected genitalia. Treatment was all-or-nothing. Those who were not accepted for SRS were generally not offered hormonal therapy, which, for many, was necessary in order to pass successfully in the gender of choice. They were given no alternative but to live in the gender of original assignment. Those who were not offered services were often told that they were not transsexual, even when they met the criteria for transsexualism that later appeared in the Standards of Care of the Harry Benjamin International Gender Dysphoria Association and in the DSM III. Some of the clinics offered to help the individual somehow manage in the gender of birth, but this was little more than a token gesture; few took them up on it.

The clinics were, in essence, condemning the individual to live in the gender of birth. They did this to thousands of men and women. Some simply went to other clinics and gave the clinicians what they wanted (c.f. Meyer & Reter, 1979), but most did not. They listened to the self-proclaimed and often untrained ?experts,? and remained men and women.

Beyond Bungling

In a few instances, the treatment of transsexual people by the gender clinics went far beyond well-meaning ineptitude. The ignorance and desperation of transsexual people were used as tools for manipulating and controlling them. Promises of hormones and eventual reassignment surgery were used as carrots-on-sticks. Those who refused to provide whatever information the clinics demanded, who would not agree to participate in experiments, and who would not agree to unlimited follow-up (which they were often required to pay for!) were denied services. ?. . . the probability of being able to maintain (postsurgical) contact with the patient is one of the factors assessed before sex reassignment.? (Steiner, Zajac, & Mohr, 1974).

Those who did not restructure their lives in major ways according to the demands of the clinician (changing jobs, divorcing spouses) were subject to punishment by expulsion from the program. Hormonal therapy and SRS were subject to withdrawal at any time, for any reason, without explanation, and without appeal, as illustrated by the following:

In an effort to upgrade the services, to improve the rapport between clinic physicians and these patients, and to provide the material for this report, the following prospective study was undertaken . . . All transsexual patients receiving hormone therapy at the clinic were asked to submit to a semi-structured interview, including a medical history, and a problem-specific physical examination. Participation in the study was mandatory if the patients wished to continue to receive hormone therapy at the clinic. (Cooper, 1987, p. 142, italics mine).

Interviews conducted solely to facilitate treatment, or to improve services at a clinic, which do not specifically discriminate against transsexual people, and which do not require mandatory participation in research would not be objectionable. However, making treatment contingent upon cooperation is, in my opinion, not ethical. I contacted Dr. Cooper via the mail, and he assured me that participation in his study was not mandatory in order to receive hormonal therapy. His article argues otherwise.

The Gender Clinics and the Professional Literature

Incredibly, considering their official (research) rationales, there seem to have been few publications from some of the gender clinics. But workers at most of the clinics did publish. As previously noted, many of the articles were well done, but some were instrumental in promulgating inaccurate and naive views of transsexualism. Some of the more notable inaccuracies concerned the unreliability and questionable lifestyles of transsexual people, the stereotyped notions of femininity and masculinity held by transsexual people, and the supposed homogeneity of transsexual people.

Unfortunately, the erroneous conclusions and misinformation common in early studies continue to be taken seriously. Well-conceived and more enlightened studies are unfortunately still rare. The ignorance and arrogance and bias of many researchers continues to find its way into print, and exclusionary criteria for sex reassignment based on ?true? (as opposed to, I suppose, ?not true? transsexualism; cf Dolan, 1987) and sweeping generalizations continue to appear in the literature: ?These (secondary transsexual) individuals do not pass easily in the opposite gender role without the aid of hormones and electrolysis. Their natural voice is quite masculine, numerous expensive cosmetic procedures are often necessary before they can approach the ?total femininity? they seek.? (Dolan, 1987).

The psychoanalysts Robert Stoller and Leslie Lothstein, in particular, are continuing proponents of the clinics:

The vast majority of gender dysphoric patients obtain sex reassignment surgery on a fee-for-service basis without benefit of a prolonged diagnostic evaluation. As a group they are probably more impulsive, impatient, anxious, and demanding of sex reassignment surgery than are those who enroll in university-based clinics. Many of these patients are probably secondary transsexuals who feel surgery will relieve their emotional distress. Unless these patients need additional surgery, they will be generally unavailable for follow-up. The lack of baseline data on their presurgical psychological states makes it impossible to evaluate the changes caused by sex reassignment surgery. Moreover, neither the surgeons who perform sex reassignment surgery on demand or their patients seem to be interested in understanding the psychological roots of transsexualism. (Lothstein, 1982, pp. 422-423.)

Lothstein (1982) has gone so far as to suggest that sex reassignment should be limited to university-affiliated clinics.

Heaven forbid.

The Decline of the Gender Clinics

The clinic at Johns Hopkins University went out of business as the result of a press release which followed the publication of a controversial outcome study by Meyer & Reter in 1979. Just as its opening had served as a catalyst for the formation of new centers, the closing of the Johns Hopkins clinic was followed by the demise of a number of gender centers. Several clinics survived, but have become officially disassociated from their universities. The last of the U.S. university-affiliated clinics, at the University of Virginia, closed in late 1989 or early 1990.

There are perhaps a dozen gender clinics in the United States today. Some operate on a for-profit basis, and some do not. It would be nice to think that those who work in these clinics have learned the characteristics of transsexual people, have begun to treat transsexual people with respect and dignity, and are functioning as true treatment centers?and to a large degree, they have?but there remains much need for improvement. Several of the present-day gender clinics, for example, include as part of their application questionnaire the question, ?How often have you used prostitution as a means of supporting yourself?? Note: the question is not have you, but how often have you. This is not asked of persons seeking treatment for other conditions; it is a slur on transsexual people. The tragedy is that the authors of the questionnaire probably did not realize the offensive nature of such a question.

Some gender clinics, including the Gender Identity Clinic at Clarke Institute of Psychiatry in Toronto, require transsexual persons to cross- live before they will prescribe counter- sex hormones. This policy, and the practice of prescribing minimally effective hormones (as Clarke does; see Jennifer Usher?s review of Blanchard & Steiner, 1990, elsewhere in this issue), places transsexual persons at risk of ridicule and physical attack. This is needless gatekeeping; it must stop.

As Stoller noted in 1973, ?... there is something about the person who requests sex reassignment that brings out or attracts a lower level of medical performance in all areas of evaluation and treatment.?

The Devaluation of Transsexual Persons

Wolf Wolfensberger (1972) has written about the devaluation of human beings with mental retardation, and of the tendency of service organizations to treat their clients with mental retardation as less than human. Transsexual people are similarly devalued. Like persons with mental retardation, men and women with transsexualism have been historically unable to defend themselves. First, they have often been insecure and frightened, and in desperate need of services. They have had (and continue to have) little protection under the law. Until recently, they had no advocacy or support organizations. Society has not been sensitive to their needs. Transsexualism was (and still is) considered an aberration, a curiosity, a condition to elicit fascination and amusement, but not pity and concern.

Such devaluation was inherent in the treatment of transsexual persons by the gender clinics. One need only recast the disorder to see just how outrageous much of this treatment was. Were persons with cancer denied medical treatment if they refused to participate in research studies? Was treatment of persons with heart disease terminated if they refused to restructure their lives according to the dictates of their physicians? Were children with leukemia libeled in the medical journals? Were persons with diabetes forced to conform to their physicians? notions of diabetism? Were victims of car wrecks turned away if they were considered unlikely to agree to extensive follow-up? Were stroke victims asked how often they had resorted to prostitution?

I think not.

It is my belief that despite improvements, discriminatory treatment is still prevalent. But the treatment of transsexual persons will not reach equity with the rest of humanity until their devalued status is overcome. This means changing not only the attitudes of society, but of service providers, and of transsexual people themselves. It will mean well- designed and sensible research studies. It will mean self-advocacy, and political lobbying, and consumer awareness. It will mean organization and ongoing activism. It will perhaps mean removal of transsexualism as a mental disorder from the DSM III-R, as happened with homosexuality. It will mean legal reform.

Transsexualism is not a shameful condition, nor is its treatment in any way less than honorable and ethical. Transsexual people have the same right to competent and effective treatment as does anyone else. It behooves both service providers and consumers alike to be aware of consumer issues and to institute checks and balances in the treatment procedure. The transsexual person, for example, is as entitled to a second opinion as is the woman who has been told she needs a hysterectomy.

The closing of the university- affiliated clinics was ultimately perhaps not a bad thing, for in their wake, treatment centers have arisen which place a priority on the human needs of their clients, and which have relegated research to its proper place, secondary to human suffering. In recent years, service providers have become better informed and transsexual people have begun to become better consumers. The light at the end of the tunnel is not yet in sight, but perhaps our eyes, having become adjusted to the dark, can see that the passageway ahead is not quite so dark as it is behind us.


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