Bodies in Doubt: An American History of Intersex (review)

An intersex is an individual with a very rare developmental disorder in which both male and female characteristics develop. In some cases the apparent sex may not be determinable at birth. Professor Elizabeth Reis, an historian, has utilized physicians' published case histories, including relevant drawings and photographs, to relate her American story about these rare developmental abnormalities.

In pre-Revolutionary times, only the more dramatic cases came to public attention, and they were generally looked upon with awe and apprehension; they were frequently described as monsters or hermaphrodites. Physicians as well as the public often looked upon these unfortunates with apprehension and disdain.

In the 19th century, the abhorrence of the individuals diminished significantly, and physicians started to make more objective assessments of the cases. Their descriptions with detailed drawings of the abnormal external genitalia were accompanied by attempts to define the correct sexual orientation. They began making sincere efforts to guide these patients in a direction that seemed appropriate for their physical and psychological orientation. Minor surgical procedures, such as removal or shortening of a hypertrophied clitoris and the creation of a simple vaginal opening, were carried out.

By the mid-20th century it became obvious that a team approach was essential for the ideal management of these very complicated cases. The Johns Hopkins group led by endocrinologists and psychiatrists was probably the most active in the country for the study and management of these rare developmental conditions. More extensive plastic surgery was developed. In females the vaginal orifice could be opened and deepened, and in males a hypospadias corrected. Synthetic male and female hormones became available to induce and strengthen the desirable secondary sex characteristics. The need for psychiatric support during these surgical and endocrine manipulations made the team approach very desirable.

In those cases in which the sexual identity of the newborn infant was uncertain, a decision was usually made promptly with the participation of the parents. The identity of the gonads (male or female) of the infant seems not to have been an important consideration for the future adjustment of the individual. John Money, a leading psychologist in the Johns Hopkins group, was convinced that changing the sex after the age of three or four years increased the opportunity for the development of future psychiatric problems.

The variety of presentations and the several diagnostic terms commonly employed was leading to confusion. Accordingly, in 2005 an international group met in Chicago to attempt clarification. This Chicago Consensus Conference rather quickly reached the conclusion that the term Disorder of Sexual Development (DSD) would include all of the cases and at the same time avoid the use of all terms that were embarrassing to the patients and their families. Some proponents of this term went a step further, recommending the use of the abbreviation, DSD alone, especially when dealing with children. Reis suggested an alternative term, Divergence of Sexual Development, which preserves DSD and doesn't medicalize the diagnosis.

In telling her story, Reis has also provided an excellent collection of illustrations. For scholars and medical students, this pleasantly written history provides an opportunity to view examples of these unusual problems.