One of Us: Conjoined Twins and the Future of Normal (review)

Alice Domurat Dreger's new book is a remarkable continuation of the work she began with her Hermaphrodites and the Medical Invention of Sex (1998). This book, however, is even more engaging as it deals with the history and current use of surgical intervention in cases of conjoinment. Dreger asks the question whether all conjoinment is a pathology that demands cure, and this is an advocacy book—yet where she debates material that counters her point of view (e.g., p. 70), she is clear in its exposition and its presentation, while placing it in a broader context.

Dreger's argument is that there are cases of conjoinment where the medical response has been to the "freakishness" of the children rather than to the "best interest of the child," Anna Freud's mantra that has become the basis for the legal status of the child. This is a parallel argument to Dreger's work on "intersex," where she has argued that the surgical ability to alter ambiguity of the genitalia is a social response, not a medical one. Medicine has ever seen intersexuality as a condition demanding a restoration of the "normal," even where there is no normal to be restored. As with "intersexuality," there is a very wide spectrum of conjoinment, which is often reduced to the need to create an individual (or two, if the surgeon is lucky) who is autonomous. But as in her earlier work, Dreger is very sophisticated in her presentation. She argues that there must be a spectrum of concern. On the one end are the children who can live a productive life together; here she gives us some very good historical and contemporary cases (such as the Hinton twins and Lori and Reba Schappell). On the other end are twins who are joined in a way that makes their lives impossible, or cases where one twin is truly vestigial—that is, where one has no consciousness and is not fully human in any sense.

For a general audience, this book will be an eye-opener—but this will also be true for the medical profession and medical ethicists. Will its message be generally accepted? Recent work on transgendered people has altered the medical response. John Money, the most important spokesperson for transgender alteration, has gone from being an authority to being demonized in a decade. (He even appeared slightly disguised as the righteously murdered victim on a recent NYPD Blue episode.) But Dreger does not argue, as many of the transgender advocates do, that all ambiguity or, in her present case, all conjoinment is good. Her case is solid because it is sophisticated. Her presentation makes it clear that there are social and psychological ramifications for both society and the conjoined twins.

Dreger's archival work in the University of North Carolina's collection of the papers of the original "Siamese twins," Eng and Chang Bunker, is incredibly illuminating. The anxiety of the descendants of these North Carolina slaveholders of Chinese descent about their "mixed" racial background dominated the family's sense of their common ancestors; unlike many other cases, there seems here to have been little concern about any genetic tendency toward conjoinment. Dreger shows just how complex the debates about inheritance (so central to our present-day obsession with real or fantasized genetic manipulation) can be. Inheritance, too, has many faces. Dreger's argument is presented in an engaging manner. The public fascination with these cases in the media is handled with a sense of what has happened to the notion of the "freak" in a world where it is assumed that everything can be corrected on-camera. Dreger's discussion of the often-evoked model of the "sacrifice" of one of the twins for the life of the other is perceptive in highlighting an important omission: the model ignores the issue of the "best interests of the child." She looks at the...