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J R Soc Med. 2004 December; 97(12): 603–604.
PMCID: PMC1079680

One of Us

'Those whom we call monsters are not so to God.'— Michel de Montaigne, Essays [c1580]

'Conjoined twins are born to be separated.'— Anonymous contemporary surgeon

Anatomy matters. Indeed, as Alice Domurat Dreger reminds us right at the beginning of One of Us,1 a book filled with warmth, humour and unexpected insights, we probably have all at some time or other wished to change our own anatomy or that of our children. We would like to be more like other people; or how we really are on the inside. Our noses are too big, teeth protrude, ears stick out; our tummies need tucking, breasts enlarging, eyes reshaping. Or perhaps we just want to change the way our hair curls—or doesn't—or our skin looks. And because we expect medicine to cure all our ills, it is to doctors that we turn. After all, if our defects were corrected we would not only be better individuals but better members of society too. And setting aside concerns about the allocation of resources, why wouldn't the profession agree?

Quite so! The troubles begin when we, specifically surgeons, wish to decide for others what changes to their anatomies ought to be made. For make no mistake, when it comes to the more obvious anatomical anomalies it is very largely the profession that decides not only the acceptable limits of the normal but also what should be done to ensure that individuals conform as far as is possible to those norms. Nowhere is this demonstrated more clearly than in the surgical management of intersex (the conditions once grouped under the rubric of hermaphroditism), the subject of Dreger's earlier study Hermaphrodites and the Medical Invention of Sex.2 After all, who else can tell the parents of those 'unfortunates' born with ambiguous genitalia what can be done to make their children conform to one gender or the other—or nearly so? Starting from the conviction that no child with intersexed anatomy could ever grow up to become healthy and happy, it becomes plain that it would be positively cruel to leave the child's anatomy intact. This despite the wealth of evidence that, until about 50 years ago, when normalizing surgery for children with intersex conditions became increasingly common, many of these individuals were known to have done well both socially and psychologically.

In One of Us Dreger returns to these issues as they are raised by the existence of the rarer, but more visible and dramatic, case of conjoined twinning—a condition for which surgery became a treatment option at about the same time as it did for intersex cases and where many of the same assumptions are held. Namely, that no conjoined twin could possibly grow up to be content with his or her lot and therefore surgical separation of such twins should be attempted even if it will inevitably lead to the death of one. By studying their history, by letting twins and their parents tell their own stories, and by perceptive analysis Dreger sets out to examine, and indeed to a great extent to answer, two fundamental questions. First, exactly how abnormal, unhealthy and unhappy are those twins who for anatomical or other reasons have grown up still joined, i.e., what is the database underlying the surgical premise? And second, if separation during infancy is to be considered, what are the data that parents need if they are to give informed consent? Of course there are obvious benefits from normalization, but surely parents need to be clearer as to the potential costs as well as the benefits of their various options.

As to the wellbeing of the conjoined, Dreger's book introduces us to twenty or so pairs; some from history, others still living. Many became old enough to be communicating individuals, whether children or adults, and with one exception they seem not only to accept their situations but even to relish them. All come across as individuals with their own personalities and idiosyncrasies. We meet the Bunkers, the original Siamese Twins, who married two sisters, had respectively ten and twelve children, were successful farmers and were mourned as respected members of their North Carolina community when they died at the age of sixty-two. In a charming family snapshot we see Abigail and Brittany Hensel, six-year-old dicephalic twins with an essentially singleton's body, joyfully romping with their mother and older brother. (Incidentally, Harvard University Press should be ashamed of the printing quality of the book's illustrations.) The Cady girls learned to walk, dance and rollerskate; the McCarthers were popular in high school and in later life; and Lori and Reba Schappell, who are known to many through Ellen Weissbrod's film Face to Face, have day-to-day lives that seem positively ordinary. None would want to be separated, nor indeed would any of those who we meet in this book—with the exception of Laden and Laleh Bijani, those obviously happy and well-adjusted university graduates who travelled the world looking for a surgeon who would separate them, knew clearly the risks they were running and died in the attempt. So much for the notion that conjoined lives are woeful, and that no-one could possibly wish to remain conjoined given the chance to be a singleton.

Of course the common response to all this would be to say 'well they would say that wouldn't they; they've never known what it's like to have a normal life and we can give them one—or at least a more normal one'. But these conjoineds' stories deserve to be better known. Indeed I suggest that we would be well advised to follow Priscilla Alderson's advice and regularly seek out the views and wishes of children,3 even very young children,4 when making important decisions concerning their fate. Sadly, parents faced with the decision of whether or not to subject their conjoined or intersexed children to surgery rarely, if ever, hear these stories. If they did they would be bound to ask not only what is going to happen to them in the weeks and months ahead but what will life be like in the years, even decades to come; with and without surgery. Perhaps the most shocking observation to come from Dreger's study is that, despite there being a substantial number of such operations annually, there is not a single satisfactory long-range follow-up study of children who have been separated. Indeed in some cases only short-term survival appears to be the criterion for assessment. The same seems true for intersex cases. A more cynical observer than Dreger might conclude that follow-up data are unavailable because they are unwanted.

In a chapter headed 'What Sacrifice', Dreger turns to just this question of outcomes; especially poor outcomes. The most tragic cases, of course, are those in which one twin is judged unable to survive surgery. To British readers probably the best known is the recent case of the three-month-old Attard twins whose parents refused to allow one to be killed in order to give the other a chance of survival. Both girls had functioning brains, each was developing a distinct personality and indeed both were judged to be 'reasonable creatures', but nevertheless the doctors and hospital sued to go ahead. If the results were not so tragic, the legal contortions of the four judges—with each providing different, and often conflicting, reasons for killing Rosie in order to give Gracie a chance of survival—would be risible. Many commentators have seen this case as an example of either the 'lifeboat problem' (is it justifiable for one dying sailor to kill another?) or the 'climber's problem' (is it permissible to cut the rope when your companion is pulling you over the edge?), but I believe with Dreger that the thread running through all four judgments is the notion that a conjoined life is an unworthy one. Most bizarre, at least to this reader, is Justice Ward's opinion that Rosie, the twin who was to die, had 'a full claim to the dignity of independence' even though obtaining this independence must kill her!

One of Us, however, succeeds in being much more than merely a telling of individuals' stories. As an historian, Dreger knows that medicine is practised in social settings that vary over time. Indeed her opening chapter places the conjoined within history (though not, and it is not her intention to do so, with the richness of either Leslie Fiedler5 or Armand Marie Leroi6). However, in a coda, 'Freeing the Irish Giant', Dreger dares hint that we may not after all be so different from our Victorian predecessors who invited the Siamese Twins, the Irish Giant, General Tom Thumb and others into their salons so as to peer at and ponder these 'Prodigies of Nature'. For it is a fact that the Royal College of Surgeons of England still gives the Irish Giant's skeleton pride of place despite knowing that his will directed that his entire fortune be spent on burial at sea precisely so as to ensure that his body would not fall into the hands of the anatomists! Dreger, however, seeks to look forward as well as back, and in a closing chapter suggests ways that the social context in which those with anomalous anatomies are viewed might be changed, just as the context has changed for other minorities; a task at least begun by the Hastings Center project Surgically Shaping Children7 to which she has herself contributed.

One of Us is an important and insightful book written with humour and compassion, and a book full of surprises. (I wonder if Mrs Thatcher would know the origin of the title.) This book is not a polemic. Alice Dreger is not seeking an end to separation surgery or surgery for the intersexed, nor even, if I read her right, saying that killing Rosie was necessarily unjustifiable. Rather what she seeks to do is to show us that people whose anatomies are very different from most of ours are nevertheless people. Her plea is that we learn more about their lives and how these can be altered for better or for worse by medicine. In this she echoes thoughts expressed almost thirty years ago by Leslie Fiedler when he wrote:

'... standing before Siamese Twins, the beholder sees them looking not only at each other, but—both at once—at him. And for an instant it may seem that he is a third brother, bound to the pair by an invisible bond; so that the distinction between we and them, normal and Freak, is revealed as an illusion, desperately, perhaps even necessarily, defended, but in the end untenable.'5

References

1. Dreger AD. One of Us: Conjoined Twins and the Future of Normal. Cambridge (Massachusetts): Harvard University Press, 2004. [198pp; ISBN 0-674-01294-1 (h/b); £14.99]
2. Dreger AD. Hermaphrodites and the Medical Invention of Sex. Cambridge (Massachusetts): Harvard University Press, 1998
3. Alderson P. Children's Consent to Surgery. Buckingham: Open University Press, 1993
4. Alderson P. The participation rights of premature babies. Int J Children's Rights (in press)
5. Fiedler L. Freaks: Myths and Images of the Secret Self. New York: Simon and Schuster, 1978
6. Leroi AM. Mutants: On the Form, Varieties and Errors of the Human Body. London: HarperCollins, 2003
7. Parens E, Asch A, eds. Prenatal Testing and Disability Rights. Georgetown (DC): Georgetown University Press, 2000

Articles from Journal of the Royal Society of Medicine are provided here courtesy of Royal Society of Medicine Press