How the Clinic Made Gender

The Medical History of a Transformative Idea

Sandra Eder

• Éditeur: University of Chicago Press
• Année: 2022
• ISBN:
  9780226573465
• Sujet: Social Sciences
• Sous-sujet: Sociology

An eye-opening exploration of the medical origins of gender in modern US history. Today, a world without "gender" is hard to imagine. Gender is at the center of contentious political and social debates, shapes policy decisions, and informs our everyday lives. Its formulation, however, is lesser known: Gender was first used in clinical practice. This book tells the story of the invention of gender in American medicine, detailing how it was shaped by mid-twentieth-century American notions of culture, personality, and social engineering.Sandra Eder shows how the concept of gender transformed from a pragmatic tool in the sex assignment of children with intersex traits in the 1950s to an essential category in clinics for transgender individuals in the 1960s. Following gender outside the clinic, she reconstructs the variable ways feminists integrated gender into their theories and practices in the 1970s. The process by which ideas about gender became medicalized, enforced, and popularized was messy, and the route by which gender came to be understood and applied through the treatment of patients with intersex traits was fraught and contested. In historicizing the emergence of the sex/gender binary, Eder reveals the role of medical practice in developing a transformative idea and the interdependence between practice and wider social norms that inform the attitudes of physicians and researchers. She shows that ideas like gender can take on a life of their own and may be used to question the normative perceptions they were based on. Illuminating and deeply researched, the book closes a notable gap in the history of gender and will inspire current debates on the relationship between social norms and medical practice.

One

Sex before Gender: From Determining True Sex to Finding the Better Sex

Mary was born in December 1948. When she was only a few weeks old, she was referred to Johns Hopkins’s Harriet Lane Home for Invalid Children (HLH) because of a genital anomaly and an inability to retain salt.1 She failed to thrive on the formula she was fed. As chances of survival seemed slim, Dr. Lawson Wilkins, the treating pediatrician, decided to risk an adrenalectomy, the surgical removal of the adrenal glands, in the spring of 1949. After the adrenalectomy, at least “the danger of progressive virilization would be eliminated.” One month after the operation to remove her second adrenal gland, the baby developed a high fever and died despite all efforts to save her life. In a letter to the referring physicians, Wilkins wrote, “We realize fully that the bilateral adrenalectomy in her case was a heroic measure, especially in view of the fact that the adrenal hormones for substitution therapy are not yet available in adequate amounts.” The parents, however, were “far from resigned to the outcome.”

Shirley was born the same year that Mary died, but unlike Mary, she did not come to the HLH until she was five years old.2 Her mother had taken her to the local hospital when she was four because she “was worried about the hair in her pubic region.” The mother was told that Mary’s bone age was advanced, and Wilkins was called in for a consultation. A year later, in 1954, the five-year-old, of “feminine appearance,” was admitted to the HLH. She was put on cortisone and became part of a study to set up the regulation of the hormone treatment. Before her discharge, Shirley was taken to see the psychologist John Money in his office, and she left Hopkins with regular returns already scheduled with her parents.

Mary and Shirley came to Hopkins because it housed Lawson Wilkins’s Pediatric Endocrinology Clinic, the nation’s first medical center devoted to hormonal problems in children. Moreover, the clinic had a special emphasis in congenital adrenal hyperplasia, or CAH; it saw more cases of this disease than any other clinic in the world. Both children were diagnosed as having CAH, an adrenal disorder that affects the body’s metabolism and its ability to retain salt, as well as growth, sexual development, and general appearance. It affects the whole body, though its sexual effects, such as “virilization” and precocity, are most noticeable. Girls with CAH often looked “male” and were sometimes raised as boys. Boys with CAH showed symptoms of precocity such as advanced growth and early sexual development.3

The diagnosis and treatment of CAH changed in many ways during the short interval between the cases of Mary and Shirley. In 1949 at the Pediatric Endocrinology Clinic, with only limited substitution therapy available, the clinic’s director, Lawson Wilkins (fig 1.), used a surgical approach to Mary’s case that had been developed at Johns Hopkins by the renowned genitourinary surgeon Hugh Hampton Young;4 by 1953, Wilkins had developed a profoundly different, nonsurgical approach that he used in Shirley’s case. Wilkins was a pediatrician-turned-innovator in biomedicine: in 1950, he introduced a novel therapy centered on the steroid hormone cortisone as a treatment for CAH. Any doctor in the country who saw a young patient with these symptoms knew, with a phone call or two, to send the child to Hopkins. Mary’s and Shirley’s experiences, like those of the other CAH patients at the Pediatric Endocrinology Clinic, were profoundly shaped by the sweeping changes in both American culture and biomedicine taking place in the early post–World War II period. Moreover, their experiences were shaped by the presence of Wilkins and by the local peculiarities of the clinic, the Harriet Lane Home, and the Johns Hopkins Hospital.

Figure 1 Lawson Wilkins, 1940

Wilkins, the “father of pediatric endocrinology,”5 sought to anchor the new field in science, add blood chemistry measurements to the pediatric routine, accurately diagnose endocrine disease and pathologies in children, and train a new generation of fellows to become experts in the field. For more than a decade, he studied CAH and framed it as an often life-threatening adrenal pathology. Yet in the course of treating an increasing number of infants and children with CAH in his clinic, he found himself confronted with questions concerning their lives outside the clinic. For one thing, how should girls with CAH live? They were chromosomally female and had internal reproductive organs such as ovaries and uteruses, but they had been born with male-appearing genitals and looked increasingly male as they grew up.

These concerns forced Wilkins to reconsider the meaning of sex through his clinical practice. This chapter shows how shifting meanings of health, worried parents, lacking or limited therapeutics, surgical techniques, disease-centered clinical practices, medical research on adrenal health and sex determination, and a wide range of symptoms—some of them related to sex and many not—shaped his construct of gender before the sex/gender binary was formulated in the Pediatric Endocrinology Clinic. As he experimented with different treatment strategies, he devised a strategy for determining the sex assignment that would be better for a child by focusing on social functionality rather than biological certainty. This strategy of a workable gender, shaped by medical pragmatism and a concept of health that encompassed biological and social norms, would profoundly inform the formulation of the sex/gender binary.

A New Medicine

The HLH (figs. 2–3), built with private funds in 1909 on the Johns Hopkins Hospital site and staffed with Hopkins’s medical and nursing personnel after its opening in 1912, was the first children’s hospital in the United States associated with a medical school.6 From 1927 onward, the HLH’s third director, Edward Park, head of the Department of Pediatrics at Johns Hopkins School of Medicine and pediatrician-in-chief at the Johns Hopkins Hospital until 1946, supported and encouraged the establishment of specialty clinics at the HLH.7 Park introduced a new collaborative style and a disease-centered organization of the hospital, with particular focus on epilepsy, cardiac disease, and behavior/psychiatry. These specialty clinics were linked to the laboratory and allowed the study of particular patient groups over longer periods of time. Together with meticulous record keeping, this new practice established a continuity of data with one goal in mind: to produce a better understanding of long-term effects as children grew up to become adult patients.

Figure 2 Exterior view of the entrance of the Harriet Lane Home, 1950–74

Figure 3 Children and nurse in the Harriet Lane Home playroom, 1959

In 1935, Park asked Lawson Wilkins to establish a Pediatric Endocrinology Clinic at the HLH.8 The forty-one-year-old pediatrician felt himself to be an odd candidate to lead the new facility. Born in 1894, the son of a Baltimore physician who “had pulled himself up by his own bootstraps from the mire of the Dismal Swamp of Virginia,” Wilkins also pursued a medical career, graduating from Johns Hopkins Medical School in 1918.9 He received his degree while serving as an orderly in the Johns Hopkins Hospital Unit in France during World War I.10 During his internship in internal medicine at the Yale New Haven (Connecticut) Hospital in 1919, he decided to go into pediatrics. Afterward, he returned to Baltimore and the Johns Hopkins Hospital as a pediatric resident at the HLH, where he claimed to have learned of the advantage of organization in clinical care, the value of good record keeping, and the importance of appropriate follow-up.11

Wilkins’s interest in scientifically grounded medicine was matched by his concern about patient care and his ambition to organize this care efficiently. As an intern at Hopkins, he initiated a clinic for congenital syphilis to improve the care of the children who came to the HLH by organizing medical and social care and follow-up. This effort eventually led to the first subspecialty clinic at Hopkins for children with congenital syphilis, which remained the only such clinic until Park became the director in the 1920s.12 Faced with the decision between an academic career and private practice, Wilkins decided to follow in his father’s footsteps and became a pediatrician in Baltimore for the next twenty-five years. In his private practice, he was described as empathetic and passionate with his patients while employing an organized approach to patient care. His practice, said to have been one of the largest in Baltimore, was described by Park as “eminently democratic,” as it was open to and affordable by all social classes.13 During this time, Wilkins continued visiting the hospital to get treatment advice and collaborate with clinicians there.14

Wilkins’s emergence as America’s first pediatric endocrinologist makes more sense contextualized within the history of medicine and the rise of scientific medicine, or biomedicine, in the United States in the early twentieth century. When Wilkins graduated from Johns Hopkins Medical School, it was at the forefront of scientific medicine, bringing a new European format to the practice of medicine in the United States. Hopkins was the first US research hospital to incorporate bedside teaching and laboratory research, combining a French pathological model of medicine with German lab sciences. The establishment of disease-centered specialty clinics was part of both the professionalization of medicine in this period and the attempt to build clinical knowledge from a systematized approach to medical practice. Specialization was seen as essential for the advancement of the medical sciences, and reformers argued optimistically that the observation of many cases of the same disease would produce new medical knowledge. Within a clinical setting, this new, systematically derived knowledge would in turn further the development of new understandings of disease and enable the systematic study of rare diseases.15

In pediatrics, endocrinology was still a new perspective in the 1930s. Since the nineteenth century, the study of glands and internal secretions, named hormones in 1905 by the British physiologist Ernest Starling, had been associated with sensational claims of bodily rejuvenation, exaggerated therapeutic hopes, and startling notions of the body’s sexual malleability.16 The 1920s and 1930s were the golden age of endocrinology, with many discoveries, including the purification of insulin in 1922 and the isolation and characterization of ovarian and testicular hormones between 1927 and 1934, which sparked a hormone fever that captured popular attention.17 In the eyes of many medical researchers, however, the more sensationalized aspects of endocrinology tainted the clinical application of hormones.18 Despite the impact that the introduction of insulin in the 1920s had on the lives of diabetic children, investigative pediatrics focused mostly on infectious disease, nutritional disorders, and disease prevention in the first half of the twentieth century. With the scientific advances in biochemical and metabolic clinical investigation between the two world wars, the role of hormones in children and adolescents became increasingly accessible to pediatricians.19

When Park invited Wilkins to establish the Pediatric Endocrinology Clinic, the subspecialty may not have existed yet, but it was clearly on the horizon as a new perspective in pediatrics. Within a few years, in 1942, the pediatrician Nathan B. Talbot established a second clinic, at Massachusetts General Hospital in Boston. During the 1950s and 1960s, both clinics and their fellowship and training programs produced the second generation of pediatric endocrinologists in the new field, along with national and international networks of collaborators.20 Wilkins’s consolidation of knowledge in the field’s first textbook in 1950, followed by Talbot’s in 1952, was essential in shaping the gradual birth of pediatric endocrinology as a new subspecialty, making Wilkins the unofficial “father” of the field.21

Sexing the Adrenal

First described anatomically in the sixteenth century by Eustachius, the adrenal, or suprarenal, glands sit atop the kidneys, as the name suggests.22 Physiological experimentation during the nineteenth century showed that the adrenal glands were vital for survival.23 Physicians pursued physiological experimentation on animals to determine the glands’ function in the healthy body, usually through the classic physiological ablation experiment in which the glands were removed, the effects of the removal on the animal were studied, and those effects were then countered by feeding chopped-up glands to the animal.24 Research on the adrenals was part of a general development in medicine in which researchers started to imagine internal secretions as part of a complex bodily system.25 Since the 1890s, physicians had suggested that these “internal secretions” were fundamentally important for understanding physiological processes. From the beginning, three sites were crucial for the development of the study of these secretions and the glands that produced them: the clinic, the pharmaceutical industry, and the laboratory. Although these sites were often in conflict, their relationship was close and structured by the role of research material—at first animal glands, then isolated and purified hormonal substances, and finally synthesized hormones.26

The adrenogenital syndrome, as CAH had been widely known before the 1940s, had long occupied the minds of physicians interested in understanding the physiology of the adrenal glands and the mechanism of sex. It could be caused by a prenatal adrenal hyperplasia (this form later came to be called congenital adrenal hyperplasia) or by a renal tumor that developed later in life. The first recorded case of “hermaphroditism” thought to be caused by the adrenogenital syndrome dates back to the mid-nineteenth century. In 1865, the Italian anatomist Luigi De Crecchio published a curious case of a strange “apparenze virili in una donna”—a manly appearance in a woman.27 De Crecchio had been called to assist in the autopsy of an Italian man, Giuseppe Marzo, who had died at the age of forty. The autopsy revealed a uterus and fallopian tubes, a vagina opening into the urethra, a prostate, no palpable testicles, and a six-centimeter penis. Giuseppe’s physiognomy was that of a male. De Crecchio also noticed that his adrenal glands were almost as large as the kidneys.

The first description of the adrenogenital syndrome (AGS) under that name was published in 1905, describing a sudden onset of precocity and hirsutism in a ten-year-old girl that were caused by an adrenal tumor.28 By the early twentieth century, dozens of case studies had appeared in the medical literature, many focusing on the sudden virilization of female patients suffering from adrenal tumors. Authors agreed that their findings indicated a connection between the adrenal glands and a person’s sex. But how could the adrenals cause sex anomalies? After all, there were already two other glands thought to govern sex.

Up until the late nineteenth...

Table des matières

• Cover
• Title Page
• Copyright Page
• Contents
• Introduction
• 1  Sex before Gender: From Determining True Sex to Finding the Better Sex
• Robert: Hope
• 2  Happy and Well Adjusted: The Psychologization of Sex in the 1930s and 1940s
• Karen: Coming of Age
• 3  Culture, Gender, and Personality
• 4  Making Boys and Girls: Gender at Johns Hopkins
• 5  Gender in the Clinic: The Process of Normalization
• 6  The Circulations of Gender, Cortisone, and Intersex Case Management
• Janet: Despair
• 7  The Life of Gender: Reformulations and Adaptations
• Epilogue
• Acknowledgments
• List of Abbreviations
• Notes
• Bibliography
• Index