|Disability Studies Quarterly
Fall 2005, Volume 25, No. 4
Copyright 2005 by the Society
for Disability Studies
BOOK & FILM REVIEWS
Quigley, Christine. Conjoined Twins: An Historical, Biological and Ethical Issues Encyclopedia. Jefferson, NC & London: McFarland & Company, Inc., 2003. 198 pages, cloth 0-7864-1526-6, $45.00.
Reviewed by Steve Ferzacca, University of Lethbridge
There is perhaps no human "anomaly" that universally evokes deep fears, morbid attractions, and jarring experiences for those who can count the "normal" ten toes and fingers on two hands and feet, one head and so forth like conjoined twins. As a natural symbol, conjoined twins, familiar to North American and European popular cultures as "Siamese Twins," represent to their societies a residual category that disrupts and so challenges the "normal" categories of personhood and individual experience.
Christine Quigley's encyclopedia, "Conjoined Twins," documents in an annotated and perfunctory form a list of such human anomalies, the relevant biological concerns, and historically anchored characterizations, as well as the socially situated responses and ethical issues raised by their presence in society. The entries on Chang and Eng Bunker (the original Siamese twins), Rosa and Josefa Blazek (twins whose peculiar physicality was confounded even further by the birth of Rosa's son), Millie-Christine McKoy (known as the "Two-Headed Girl"), and more recently people like Lori and Reba Schappel (living adult twins conjoined at the head), reveal the many contradictions, ironies, and paradoxes of lives lived in and around such bodies.
In this mostly sweeping overview, Quigley, however, accomplishes the important task of bringing together a disparate set of sources that illustrate the manners in which conjoined twins are considered and experienced as disabling. For example, under the entry, "causes," Quigley discusses the biological processes that produce conjoined twins as well as the historical and cultural understandings of these processes from the perspective of western sources and experience. In similar fashion, surgeons and hospitals well known for attempting and performing surgical separations of conjoined twins are entered with sometimes commemorative, sometimes heartbreaking accompanying narrative. It is with these entries on surgical separation that the conjoined emotions and desires of loved ones, professionally distant experts, and interested outsiders become apparent. The surgical separation of the Lakeberg twins, Amy and Angela, illustrates ways in which medical decisions and ethics, national media attention, financial conditions, and future proceeds collide, in this case, in a mélange of tragic circumstances. Such entries are reminders of the historically contingent, complex political, and moral universe within which disability is experienced and understood. The intertwined decisions of those involved in the case of the Lakeberg twins, informed by medical knowledge and practice, desire for profit, media thirst for the unusual, and compassion for the girls, is further confounded by the events that inhabit life in general, and reveal that the politics of disability are hardly black and white and indeed, quite often gray.
Ethical issues are not listed as stand-alone entries but emerge within the articles. The medical ethics of separation are discussed specifically in the entry "separation surgery," but also in "survival rates." The complicated ethical issues surrounding separation are most apparent in nearly all entries on twins in which there have been attempts at separation or in which separation has occurred. For example, ethical concerns regarding the reproductive and sexual lives of twins are mostly found in entries on cases for which issues of sexuality were raised by behavior on the part of one or both of the twins, for example the birth of Rosa Blazek's son. Finding information regarding ethics of medical separation and moral judgments of the sexual lives of conjoined twins is complicated, or at least somewhat protracted for those who know little about the biographies of conjoined twins. Once again, these articles illustrate the intense discomfort and set of expectations conjoined twins find themselves having to cope with as human signs of biological possibilities.
The history of the popular culture of these human "monsters" is more concisely documented. Side shows, film, museum exhibits, cabinets of curiosity, marketing materials, and techniques listed among medical advancements and understandings reveal almost accidentally the blurred distinction between teratology (the "scientific" study of abnormal human births) and the fantasies and nightmare conjoined twins can evoke, as their very presence challenges the "stability of unique selfhood" so dearly valued in western experience and culture.
The value of this compendium is that it provides a general assay for a general audience, as an encyclopedia should. For those who know little about the identities of conjoined twins, it is necessary to page through the text in order to become familiar with the many cases of these "lives lived in tandem." The result is an expectedly uneven account of conjoined twins that leaves open the possibility of further inquiry into specific cases left unexamined in this text. For the more interested observer, Quigley, except for the well-known cases, does little more than name names. The annotated bibliography resolves this to some extent, but is not a comprehensive resource in terms of primary sources useful for research--biological, social, historical, or otherwise. That said, Conjoined Twins reminds us that disability, and in this case, the Bunkers, the Hilton sisters, the Toci brothers, the side and freak shows, the medical exams and advances, and so forth, remain historically anchored in the biological, social, and cultural specifics of normality. A limitation is the focus on western views and experiences of such extraordinary beings in the world. Several of the twins are imported from non-western cultures. A more fully encyclopedic account would be to include entries of other cultural histories, medical understandings, and moral universes within which conjoined twins are born and come to live.
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)