One of Us: Conjoined Twins and the Future of Normal
Author: Alice Dreger
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Alice Dreger—medical historian, university professor, and director of medical education for the Intersex Society of North American—has spent her career exploring the outer limits of congenital anomalies. First through her work on hermaphrodites (or “intersex” persons), and now in an engaging and accessible book about conjoined twins, Dreger shows how cultural strivings toward “normality” and the medicalization of “nearly everything anatomical” rob children of the rights to determine their own identities and futures.
Based on reviews of medical and popular literature, and interviews with conjoined twins and their families (several wonderful pictures also appear in the book), Dreger concludes that children who are born attached are generally not just accepting of, but happy with their lives. She finds only one instance (a well-publicized recent case of 30 year-old Iranian sisters attached at their heads) where twins born conjoined have chosen to be separated. In fact, even when one twin’s actual or imminent death threatens the other’s survival, Dreger finds no reports of the surviving twin requesting surgery. Rather, it is the medical establishment that rushes to intervene, capitalizing on the drama of the event and parents’ understandable confusion and lack of a roadmap for navigating the unexpected.
Several themes predominate here, some of them echoing Dreger’s well-known work on intersex and all of interest to those who believe that people should be able to make their own decisions about their bodies.
First, Dreger shows that with the exception of emergencies, separation surgeries are often not medically necessary procedures, and often do nothing to improve the physical health or function of either child. “In fact, they often leave the children’s bodies—at least temporarily and often permanently—much more ill and impaired than before …. [and] are almost always performed . . . because the adult decision makers believe the children will be better off psychosocially if separated, even if this means the children will lose function they would otherwise have.”
Second, an American obsession with individualism, and the fact that “American culture equates individualism with independence, and interdependence with weakness” means that we are unable to bear the possibility that mutilation, permanent disability, and even death (of one or both twins) are not actually preferable to conjoinment. Related to this is “anxiety about conjoined children’s future sexuality.” Here, Dreger quotes from a physician’s 1875 commentary on the most famous “Siamese twins” Chang and Eng, who married (separate wives), and fathered children (and incidentally, held slaves and successfully ran separate farms), to the effect that the mere fact that they were sexually active “‘shocked the moral sense of the community’.” The tribulations of Violet Hilton, a conjoined twin and performer who in the 1930s traveled through 21 states with her fiancé (and of course her conjoined twin Daisy), in an attempt to obtain a marriage license, illustrate society’s persistent worries about matters sexual, decades later. And, Dreger shows in the account of a surgeon who in 2002 surgically separated conjoined twin sisters at UCLA Medical Center, this sexual anxiety persists today; the doctor quotes himself, at the moment of separation, as saying “We now have two weddings to go to.” Ironically and sadly, however, as Dreger describes in some detail, separation surgeries often sexually mutilate both twins, especially those who share uro-genital organs, relegating them to multiple “reconstructive” surgeries and incalculable future disabilities. Dreger notes that, as is true in general of pediatric surgeries performed in the United States, virtually no information is available as to the actual results of separation surgeries; the only such report she could find (a 2002 study published in the British Journal of Urology) dividing the outcomes into “dead,” on the one hand, or “alive and well” on the other.
Dreger’s assertion that “U.S. culture tends to see nearly everything anatomical”—from from body weight to hyperactivity, menopause, birth, death and (yes) circumcision—constitutes a third and essential theme of her work. This and a brief footnote on the relative weights given to self-determination versus anatomical “normalization” constitute her only mentions of circumcision in this book. Yet, one cannot miss the point that the bioethical issues are the same, whether dealing with extremely rare phenomena such as conjoined twins or a condition that afflicts just about half of all people on earth—possession of a penile prepuce at birth. A condition doesn’t have to be rare to be pathologized by medicine or by society.
Dreger makes a number of other interesting observations. As in her work on intersex, she contrasts “freak” shows of the past, where people with unusual anatomies could at least profit from their own conditions, with the contemporary appropriation of freakish individuals by physicians who benefit with both fame and fortune while purporting to operate “for the good of humanity.” She comments upon the astronomical expenditure of public funds spent on separation surgeries, including one particularly heart-wrenching case involving Angela and Amy Lakeberg, conjoined twin girls from Indiana. In a highly publicized and controversial operation (“…if the girls had been singletons, it is inconceivable that physicians would have considered actively causing the death of Amy to save Angela”) one twin was “sacrificed” to “save” the other, whose own prognosis was exceedingly poor and who died several months later; at a cost to the public of nearly two million dollars. In addition to her own qualms about such expenditure of resources, Dreger quotes several commentators on the Lakeberg case, including Christian ethicist Stephen Lammers who said, “It is grimly ironic that we live in a society that permits a procedure such as [this one], but at the same time permits …its infant mortality to be one of the highest in the industrialized world.” Finally, Dreger talks about the need for psychosocial support in families who are confused and distressed by the prospect of raising children in a community that has never seen anyone like them. In this context, she counters critics who characterize anything other than surgical intervention as “doing nothing,” pointing out that psychosocial support is a very concrete and respectable therapy for many conditions. On the other hand, surgery performed without also directly addressing parents’ and patients’ feelings of guilt and shame only serves to confirm “that the children and their families [are] freaks.”
At one point in the book, Dreger asks herself the question, “So are surgical normalizations performed for psychosocial reasons morally flawed because they seek to fix a child who is not broken?” Her answer is surprising given the evidence she has mustered and the critical eye she casts toward the whole concept of “normalization”: “On most days, I don’t think so. It seems to me, as a parent and a normate as well as a historian, that an unusual anatomy might lead to an unnecessarily painful psychosocial existence, particularly if it is a very obvious difference that could be remedied with little risk to a child’s health, functioning, and sense of self.” Exactly what are the limits here? And who decides what’s unusual, and what level of risk is acceptable in “correcting” the this flaw? This is the kind of equivocation that makes ethicists ultimately inaccessible and even irrelevant to those—particularly parents, doctors, and others charged with making decisions—who simply want to do the right thing.
In preparing this review, I wrote to Alice Dreger and asked her opinion about circumcision. She referred me to her commentary (with co-author Bruce Wilson, published in 2003 in the Hastings Center Report) regarding the case of a 13 year-old chromosomal and gonadal female with a male appearance and male gender role, whose father was seeking to have his developing breasts, uterus and ovaries removed. The father was of Middle Eastern background, from a culture, we are told, that “favors males.” Dreger and Wilson state “…we are unsympathetic to the idea that children’s sexual anatomies are an acceptable locale for cultural relativism.”
That will have to be good enough for now. One could wish Dreger to be less hesitant condemning forced surgical intervention on bodies satisfactory to their owners. But at least she’s willing to ask the questions. This, together with so much fascinating and persuasive evidence—evidence that supports a position far less equivocal than that indicated by her measured statements—give hope that, indeed, we may be on a roll in changing minds instead of bodies.