Does the Study of History Affect Clinical Practice? Intersex as a Case Study: The Physician’s View

Classification: History

Jorge J. Daaboul, M.D.
Director, Pediatric Endocrinology
Children’s Hospital of Oakland

Note: This paper was presented as part of a panel at the annual meeting of the American Association for the History of Medicine, May 19, 2000, Bethesda. Other panelists were ethicist/historian Alice Dreger (Michigan State University) and patient-advocate Cheryl Chase (Intersex Society of North America). Dr. Daaboul can also be seen in the short film XXXY.

Abstract: Until the 19th century medicine had a strong sense of history. Medicine has since lost its reverence for historical precedent. It is my contention that this has had a pernicious effect on the practice of medicine and has been detrimental to patient care. While the technological advances of the last one hundred years have led to increasing precision in diagnosis and therapy, many of the insights and knowledge acquired by our predecessors are still valid. Our headlong rush into technological excellence, however, has obscured those insights and today we find ourselves relearning what our predecessors knew about human reactions to diseases and conditions. A good example of this is the current controversy over the medical treatment of intersex.

Prior to the 19th century most intersexed individuals led unremarkable lives. Their genital peculiarities were, for the most part, accepted as part of the variation which occurs in nature. Intersex was not a medical problem. In the 19th century intersex became medicalized and intersexed individuals were classified as abnormal and diseased.

The thrust of medicine in the last century has been to “cure” intersexed individuals by using surgical, hormonal and psychological therapies to make them unequivocally male or female. However, the functional and psychological results of this approach have been poor. Many intersexed individuals have suffered severe psychological and physical damage from medicine’s attempts to make them male or female. Nonetheless, physicians continue to consider intersex a disease to be fixed because they have no concept that intersexed individuals can lead normal lives as intersexed individuals. History, however, provides strong empirical evidence that, in the past, intersexed individuals have lived normal, happy lives without medical treatment. The empirical evidence derived from the study of history complements and gives practical weight to the ethical proposition that individuals with intersex have a right to autonomously decide their futures and be free from medical intervention.

It is a pleasure to be here this morning. During the time allotted me I want to share my experiences with the condition of intersex and specifically how the study of history helped me acquire an understanding of this condition which changed the way I practice medicine.

I was trained, as were the overwhelming majority of pediatric endocrinologists in this country, in the tradition of Lawson Wilkins. Lawson Wilkins was the “first” pediatric endocrinologist—he essentially founded the field of pediatric endocrinology in the 1950’s. He was at Johns Hopkins and while there he created a fellowship program which produced practically all of the pediatric endocrinologists who became program directors in the 1960s. Those program directors in turn trained fellows who became the next generation of program directors and so on. Most pediatric endocrinologists in this country are “descended” from Lawson Wilkins and respect for tradition and Dr. Wilkins runs high in our Lawson Wilkins Pediatric Endocrine Society which is of course named after him.

In the 1950s Lawson Wilkins started collaborating with a psychiatrist at Hopkins by name of John Money. Dr. Money was one of the pioneers in the study of human sexuality. In the area of gender identity he formulated the theory that gender identity is a sociocultural construct. Consequently, gender identity plastic and can be molded by the environment. Stated bluntly, if you give female cues to an infant, that infant will adopt a female gender identity regardless of the infant’s sex.

When Lawson Wilkins consulted Dr. Money on his patients with intersex, Dr. Money applied his theory to these individuals in a most interesting way. Since gender identity was plastic, individuals with intersex could be reared in any gender. However, establishing a secure gender identity, regardless of which gender was chosen for the child, was of the utmost importance if the child was to develop into a well functioning individual. Therefore, to achieve this secure gender identity, the parents of the child with intersex needed to be convinced that the child was the gender chosen by the physicians and subterfuge and dissimulation were accepted tools to achieve this purpose. In addition, the intersexed individual must have no doubts as to gender identity. Consequently, early surgical intervention to make the child look more like the assigned gender quickly gained favor. In addition, subterfuge and dissimulation were also used with the intersexed individual so there would be no doubt as to gender. Implicit in this reasoning, of course, is that individuals with intersex were flawed and could not function well in society.

All of us trained in the tradition of Money/Wilkins followed their recommendations. We lied to the parents of intersexed children and we lied to the children and we subjected intersexed individuals to “corrective” surgery. I admit that I followed the party line, albeit with vague uneasiness. Three years ago, I had the good fortune to do an ethics fellowship at the University of Chicago and my vague uneasiness turned to horror as I realized that my specialty was willfully violating norms of informed consent and respect for patient autonomy. I brought this up to my colleagues and in effect two arguments were used to defend the current practice.

The first was that our founder Dr. Wilkins had formulated this approach and that several generations of very smart pediatric endocrinologists had implemented it without improvement or modification, therefore it must be right. Obviously and despite the reverence that some of you may have for the Middle Ages and the Scholastic tradition, this argument was easy to rebut. The second argument was that intersexed individuals could not possibly live normal lives as intersexed individuals and that the only chance they had for happiness and psychological well being was the establishment of a secure male or female gender identity. There simply was no precedent for intersexed individuals living as normal people in our society. This argument proved difficult to refute. If, in fact, being intersexed is not a viable option because it would result in severe emotional and psychological dysfunction, then gender assignment to the male or female sex is mandatory. The only issue to argue about is who does the assigning and, in collaboration with Dr. Joel Frader at Northwestern, that became the focus of my ethical inquiries. Traditionally sex assignment is made by the physician. Dr. Frader and I contended that that decision should be made by the parents in accordance with current legal and ethical standards.

Then a funny thing happened, I read Alice’s book, Hermaphrodites and the Medical Invention of Sex. In this book Alice demonstrates that intersexed individuals led relatively normal lives up to the late 19th century at which point they were “discovered” by medicine and deemed ill and in need of repair. What’s fascinating about that process was that intersexed individuals were deemed ill solely on the basis of the appearance of their external genitalia. Everything I have read indicates that these individuals were psychologically healthy and well adjusted. In my mind, there are two questions to be answered with respect to the medicalization of intersex. First: why did late 19th century medicine ignore intersexed individuals’ apparent psychological well being and focus on their “abnormal” external appearance. Secondly, why does modern medicine continue to ignore these 19th century case histories.

The answer to the first question is discussed by Dr. Dreger and I will not go into it in any length here. Summarizing, 19th century medicine “discovered” hard science and tried to reduce all human functions to mechanistic processes to be dissected and analyzed. Physical normals were established and anything that differed from the norm was deemed abnormal. Obviously, other sociocultural factors such as homophobia were at work in the case of intersex, but it is my belief that the impetus for classifying intersexed individuals as diseased or abnormal sprang form 19th century medicine’s obsession with establishing statistical normals. Once normality was defined in this artificial, statistical way, anything which deviated from the norm was by definition classified as abnormal.

Some of modern medicine’s failure to deal with the subject of intersex is surely the result of this focus, but modern medicine is, or claims to be much more psychologically astute and less focused on pure description than in the 19th century. So why does modern medicine ignore the lessons of history which shows that intersexed individuals at one point lived normal lives without medical intervention? I believe the answer lies in modern medicine’s attitude towards the past. Modern American medicine displays a hubris and an arrogance that leads it to believe that only current observation, analysis and experimentation are valid. I see this daily on rounds. When anyone quotes an article that is more than five years old the article is deemed out of date and worthless and the offending individual told to brush up on his literature. I believe this is one of the mechanisms operating in the case of intersex. All literature reviews stop five years ago. When I quote Dr. Dreger’s book to my colleagues, they all state “that’s ancient history”, pardon the pun. What’s interesting about this process is that in this, the most scientific of ages, we purposely ignore a large body of literature that could shed tremendous light on the condition of intersex, thereby establishing ourselves to be wholly unscientific. Our obsession with the present, our ignorance or dismissal of history and in the specific case of my specialty a reverence for our founding fathers has led to poor medical care for the individual with intersex who have sufferd physically and emotionally as a result, a topic which Ms. Chase will no doubt delve into.

To end on a personal note. For me the study of history proved invaluable in my formulating an approach to intersex. The moment I realized that there was a historical precedent for individuals with intersex leading happy, normal productive lives I revised my approach to intersex and have become a strong advocate of minimal intervention. The study of the history of intersex gave me the knowledge to improve and refine my approach to this condition. Consequently, I am a better doctor to my patients.

I am sure that there are similar stories waiting to be told in other specialties of medicine. Stories in which vexing clinical problems or flawed standard practice could be corrected if we payed attention to the wonderful case histories and astute clinical observations of our predecessors.