Separating Gracie and Rosie
- One of Us: Conjoined Twins and the Future of Normal by Alice Domurat Dreger
Harvard, 198 pp, £14.95, May 2004, ISBN 0 674 01294 1
On page 38 of this book appears one of the most remarkable photographs I have seen. It shows a young mother playing an energetic game (tag, perhaps, or pig-in-the-middle) with her three children, two girls and a boy. There are four lively, happy people in the photograph, but only six arms and six legs, for the two girls share a body. Between them they have two legs and two arms, but above a single pair of shoulders there are two necks, two heads, two smiling faces. One of Us is about conjoined twins, and its starting point is the conviction that often such twins should be thought of as two people inhabiting one body, not as two people inhabiting two not-yet-separated bodies. Clearly Abigail and Brittany Hensel (the six-year-olds to whose photograph I keep returning) can never be separated (though they do have two hearts); nor need they be, for they have a fit and healthy body, in which they can do all the things people normally do, except, of course, get away from each other.
The mysterious mathematics of this photograph, four people in three bodies, raises a host of puzzling questions, questions which seem to have been ignored by philosophers. Let’s start with a problem in moral philosophy. On 8 August 2000, conjoined twins, Gracie and Rosie Attard, were born at St Mary’s Hospital, Manchester. According to expert medical opinion, if they were not separated both would die; but to separate them would (since they had between them only one functional heart and pair of lungs) be to kill one of them, and Gracie’s life was the only one that could be saved. The parents, Roman Catholics, objected to such a deliberate act; in two court cases the hospital established that separation would be lawful. In order to reach this conclusion, the four judges adopted a series of very different arguments to justify killing Rosie.
Justice Johnson, who heard the initial application, thought of the children as having not one body but two: Gracie owned the heart and lungs, Rosie did not. ‘Gracie’s body’ was supplying Rosie’s with oxygen. At first he wanted to think of Gracie’s body as Rosie’s life-support machine, for everyone knows there are circumstances in which you can switch off a life-support machine, but even after he abandoned this metaphor, he wanted (because he needed an appropriate legal precedent) to think of the separation of Rosie and Gracie as comparable to the withdrawal of treatment from a brain-dead patient. By first mentally separating Gracie and Rosie he discounted the significance of the act of separation. All three appeal judges fortunately rejected this line of reasoning: they accepted that to separate Gracie and Rosie would be deliberately to kill Rosie.
Lord Justice Ward argued that this act was one of ‘quasi self-defence’ (with the doctors acting on Gracie’s behalf). Rosie, he wrote, ‘may have a right to life, but she has little right to be alive. She is alive because and only because, to put it bluntly, but nonetheless accurately, she sucks the lifeblood of [Gracie] and she sucks the lifeblood out of [Gracie] . . . If [Gracie] could speak she would surely protest, "Stop it [Rosie], you’re killing me.” [Rosie] would have no answer to that.’ But of course she could have a very straightforward answer: ‘It isn’t your lifeblood, Gracie, it’s ours.’ Imagine a number of passengers in an overcrowded lifeboat which has begun to ship water. The case for throwing one of them overboard is not that she is killing the others and they have a right to act in self-defence. She has as much right to be there as they do, and the lifeboat belongs equally to each one of them. This was surely Gracie and Rosie’s position in their shared body.
Lord Justice Brooke argued that the intention was to kill Rosie in order to avoid a greater evil, the death of both children. He was therefore obliged to invoke the doctrine of ‘necessity’, that harm must sometimes be done to avoid a greater evil, although he was well aware that he was relying on a utilitarian argument, and utilitarian arguments fit very uncomfortably with any recognition of fundamental rights, such as the right to life. His problem was that since R. v. Dudley and Stephens (1884) it has been a legal commonplace that there is no defence of necessity against a charge of murder. Dudley and Stephens were two of four men who took to a lifeboat when their yacht, Mignonette, was wrecked. After twenty days at sea without food and water, three of the men killed and ate the ship’s boy. In rejecting their defence of necessity the court transformed the law. The previous year Sir James Stephen had argued with perfect confidence that there was indeed such a defence:
The old instance of the two drowning men on a plank large enough to support one only, and that of shipwrecked persons in a boat unable to carry them all, are the standing illustrations of this principle. It is enough to say that should such a case arise, it is impossible to suppose that the survivors would be subjected to legal punishment.
What Brooke sought to do, in a tour de force of legal reasoning, was to put the law back to the position it had been in before the loss of the Mignonette. It is the clear implication of his argument that there was nothing in principle wrong with killing and eating the ship’s boy. The problem was with picking on him as the weakest of the party. Had lots been drawn to decide who should die, the survivors would, on Brooke’s reasoning, have had a valid defence in law. He and his colleagues discussed actual cases of hard choices: the climber who had cut the rope by which his partner dangled over a precipice in order to avoid being dragged after him (now the subject of the film Touching the Void); a ship’s captain who had flooded the engine-room after an explosion, killing some members of the crew in order to save the lives of the rest.
Of the four judges, three sought to construct their arguments so that they applied only to conjoined twins, or only to hard choices made by doctors. But Brooke’s judgment is hedged about with no such limitations. It is a remarkable feature of this case that if it comes to be accepted as good law, then the right that Rosie lost, the right to life, and the right that Gracie gained, the right to have someone else die that she might live, are rights that all within the jurisdiction of the English courts gained and lost along with them. Every mountaineer, every sailor, every English citizen was conjoined with them.
All the judges agreed that separation was a good in itself, because it would make possible autonomy, self-determination and privacy. Lord Justice Walker went so far as to argue that killing Rosie would be in her best interests, since separation would give her ‘the bodily integrity and human dignity’ which was her right. Lord Justice Brooke agreed that ‘the proposed operation would give these children’s bodies the integrity which nature denied them,’ although at least he recognised that the operation was not in Rosie’s interests. Only Ward had the sense to describe the granting of ‘bodily integrity and dignity’ to Rosie as ‘a wholly illusory goal’ if she was to be given independence at the expense of her life. None of the judges seems to have been able fully to grasp the force of an argument made by David Harris QC on behalf of Rosie: ‘John Locke’s assertion that "every man has a property in his own person. This no body has any right to but himself” . . . is difficult to apply in the case of conjoined twins.’ I have looked again at the photograph on page 38 to try to find some trace of the absence of dignity or integrity in this happy family scene, but no matter how hard I look, I cannot see it. The notion that to be conjoined is to be deprived of something to which you have a right must, I think, seem quite mistaken to anyone who has looked closely at that photograph.
If two of us share a body, clearly neither of us can have autonomy. We have to co-operate in order to do anything. Eng and Chang Bunker (born in 1811), who invented the name Siamese twins, solved this problem by taking it in turns to be in charge. Nor can we have privacy as that term is normally understood: both the Bunker twins married and had children, but in 1934 Violet Hilton, a conjoined twin, was denied a marriage licence in 21 US states on the grounds of ‘morality and decency’, in other words because she would not be able to have sex in private. The problem of autonomy is clearly a real one – at six, Britanny Hensel wanted to be a pilot while Abigail wanted to be a dentist, and clearly two people in one body cannot be both simultaneously. But the problem of privacy seems a false one – if there is no body there but yours, then you have privacy, one might argue, even if another person (in Violet’s case, Daisy Hilton) is present.
It is only if we assume that autonomy and conventional privacy are vital that we will be convinced that conjoined twins must, whenever possible, be separated – though separation is always dangerous and damaging. The case of Ladan and Laleh Bijani, who died in 2003 while undergoing separation at the age of 29, might give one the impression that conjoined twins usually want to be separated: as it happens, they are the only twins to have been separated in an operation to which they had consented. Conjoined twins usually want to stay together, and have refused separation even when it is the only hope for one of them to survive (when one has cancer, for example).
Reading Alice Domurat Dreger’s book, you soon discover how little is known about conjoined twins. There have been no adequate follow-up studies to find out how well those who are separated recover, physically and psychologically, from separation, or to compare the quality of life of the separated with that of the conjoined. (One study on the outcome of surgery classified patients into just two categories: alive and well; or dead.) There are no reliable statistics on how common conjoined twins are. (A simple preliminary question: should the birth of conjoined twins be counted as one birth or two?) Estimates vary from one in 50,000 births to one in 200,000. What counts as a conjoined twin? Some people are born with an incomplete body attached to theirs, but in the absence of another person, of another brain, the medical term for this condition, parasitic twin, seems misleading. (My wife’s aunt, I now discover, was separated in infancy from a parasitic twin; her twin was in the end supposedly the death of her, for in middle age she developed cancer at the site of the separation.)
But Dreger’s central purpose is not to fill in the gaps in our knowledge about conjoined twins, and she recognises that prenatal testing will make such births increasingly rare. One estimate is that there are currently five sets of conjoined twins, and fifty individual survivors of separation operations. Already, most conjoined twins conceived in the developed world are aborted. Her first purpose is rather to provoke us into thinking about what it is to be normal. She started as a historian of science, working on the history of medical treatment of hermaphroditism (now called intersex). Soon she found herself meeting people who had had, in infancy, ‘genital normalisation surgery’: men who had been surgically reconstructed as women because their penises were judged to be too small (smaller than one inch when stretched at birth, according to American medical protocols; British surgeons are apparently less knife-happy); women who had had their clitorises reduced in size because they were judged to be too big; people born with both sets of sexual organs, who had been ‘assigned’ to one sex rather than the other and reconstructed accordingly. These people had never consented to surgery; that they had been operated on was often withheld from them in adulthood; though ‘normalised’ they were often left without sensation or function. The Intersex Society of North America campaigns against ‘unwanted genital surgeries for people born with atypical reproductive anatomies’, and Dreger’s underlying assumption is that if there were enough conjoined twins, they, too, would found a society against unwanted surgery. (Conjoined twins also sometimes undergo genital normalisation on separation; when there are not enough sexual organs to go round, two boys will be reconstructed as a boy and a girl; in one case which Dreger discusses, the parents went to hospital with two sons and came home with one daughter.) Dreger’s brief discussion of intersex makes heartbreaking reading, and one way of reading this book is to recognise that the pictures she does publish (the picture of the Hensel family, for example), stand in for all the pictures she does not: those of atypical reproductive anatomies and of botched surgeries.
It is a basic truth that no one is ‘normal’; to be normal is simply to pass for normal. Each of us has several genetic or other abnormalities: I, for example, have Dupuytren’s contracture. But if the thought of abnormality alarms us so, it is because every normal Dr Jekyll is conjoined with a monstrous Mr Hyde; each of us has a ‘secret sharer’ (to borrow the title of Conrad’s short story about a man haunted by his alter ego) that he is reluctant for others to meet, that he would prefer not to have to meet himself. The language of privacy, self-determination, autonomy, obscures the extent to which all our psyches are fractured, conflictual, multiple. The language of male and female, heterosexual and homosexual, ignores the ways in which we are all intersexed. If we could bear to acknowledge something of this psychological complexity we might find the bodies of conjoined twins less shocking. If we recognise that our image of psychic integrity is fundamentally unsound then we might place less value on the ‘bodily integrity’ that Lord Justice Walker wanted to restore to Rosie Attard even at the cost of her life. Dreger does not pursue this line of thought: her preferred enemies are not our inner demons; her target is our normalising society. Just as women and racial minorities have come to be recognised as different but equal, so, she argues, society must come to respect the rights of conjoined twins, of intersexuals, of people born with cleft palates, of dwarves and giants.
Dreger also wants us to think about what she calls ‘the limits of individuality’. Most of us have (or have had) attachments so close that they make us feel conjoined. A breast-feeding infant is parasitic on her mother. A foetus is even more so, but under English law obstetricians do not face the hard choices faced by Rosie’s and Gracie’s doctors: an unborn foetus is not legally a person, and so the survival of the mother always takes precedence over the life of her unborn infant. Lovers touch all the time; even in sleep they reach out to each other. In the days when people married ‘for better or worse, for richer or poorer, in sickness and in health’ they were conjoining themselves; they were, in the words of the Prayer Book, ‘one flesh’. And most of us have had experience of separations so dreadful we doubt that we can ever recover from them. The child is weaned; love ends in divorce; people we love die and leave us on our own. Conjoined twins serve as a metaphor for fundamental truths about what it is to be human. Much of the book’s power, much of its importance, derives from the ways in which the stories it tells resonate with the lives of those who are neither conjoined nor intersexual. Reading this book brought home to me, for example, just how painful I find it to be irrevocably separated from my sister. Each reader, I suspect, will find their own story here.
The book ends with a final case study in ‘abnormality’. In 1783, Charles Byrne, ‘the Irish giant’, died. In his lifetime he had made a living by putting himself on display, but in his will he set aside money for a burial at sea, so that his body would not fall into the hands of the anatomists. The unscrupulous undertakers, however, sold his corpse to the highest bidder; his skeleton is now held by the Royal College of Surgeons, which displays it in the Hunterian Museum, along with a plaque explaining how they came by it. By what right does the Royal College claim to do as it pleases with Byrne’s mortal remains? His wishes cannot be ignored simply because he is dead, or no will would have any force. It will not do to argue that it makes no difference to him now, for that would legitimise theft providing the crime never came to the victim’s attention. Yet for two centuries no one has felt the need to ask whether Byrne ought to be on display. When Dreger finally asked this rather obvious and elementary question the Royal College had no satisfactory reply. The doctrine of necessity provides something resembling a coherent argument for killing Rosie so that Gracie might live. There might well have been legitimate reasons for conducting an autopsy on Byrne when he died, despite his wishes to the contrary, so that other people with atypical anatomies might benefit from improved medical knowledge; but it is hard to see how those reasons could extend to retaining and displaying his body two centuries later. Let’s hope the publication of this book leads to the burial of Byrne, and to a serious rethinking of all our rights to consent to treatment, to privacy and autonomy, and to life itself. It is because this book has something important to say to ‘normates’ about their own lives, as well as about the lives of conjoined twins, that it stands a real chance of changing how we think about those with atypical anatomies.