A modern obsession and a modern nightmare

Conjoined twins must face life without the tiniest of freedoms that we have pursued too enthusiastically
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The Independent Online

Yet again the story of a pair of conjoined twins has gained the attention of the world. Ahmed and Mohamed Ibrahim, the Egyptian two-year-olds who were born fused at the head, are separate now, critical but stable in a drug-induced coma. There is a long way to go before anything approaching success can be claimed. But anyone who has seen television footage of the boys, struggling and wriggling in their vain attempts to dictate the arc of their own movements, must believe that the risks involved in this complex operation are worth taking.

And goodness knows the world is well-versed in the risks. It is not long since the plight of Laleh and Ladan Bijani, 29-year-old Iranian twins, became common currency around the globe. The women, who had sought an operation to separate them for many years, were mourned by people who had never heard of them days before, when they both died on an operating table in Singapore earlier this year.

Many people believed that their operation should not have gone ahead at all. Even the team of surgeons who undertook the procedure claimed afterwards that they had tried hard to dissuade the pair from the course they were bent on. Others believe that Ladan, the dominant twin, pressured her sister into an operation she would have preferred not to have undergone. On the whole, though, the decision made by these intelligent adult women is respected, even though it caused them both to die.

This respect for the integrity of the individual's right to choose was in marked contrast to the case of Gracie and Rosie Attard - better known as Mary and Josie - who set off a storm of controversy when they were operated on under the orders of a British judge, and against the wishes of their devout Catholic parents. In that case, there had been no prospect of saving both lives. Rosie's existence was entirely dependent on her sister's, while Gracie would herself have died had she continued to pump blood for her twin as well as herself. The ethical dilemma here was that medical intervention would mean certain death for Rosie, and a decent chance for Gracie. Gracie is now a thriving three-year-old, adored by a family who still believe that the operation that saved her and killed her twin was wrong.

Alongside these three high-profile, widely discussed conjoined-twin cases, there are many others, also well known, also broadly debated. Each case, as any specialist will say, is different. Yet there remains an uneasy feeling that the intense attention most of them attract is the same.

The most common worry is that the obsessive public interest is the same as the fascinated voyeurism of past centuries, when conjoined twins were included in travelling freak shows. Often cited are Chang and Eng, the brothers whose origins in the Far East gifted the English language with the now-despised coinage "siamese twins", and whose images were used in posters campaigning for union during the American Civil War.

In fact, the brothers exploited their disability rather cannily, and were able to retire to the US and buy a successful farm on the proceeds. They both married, to sisters, had something like 20 children between them, and died at 63. Today, siamese twins, or their parents, often enter into deals with the media that generate cash to cater for their unique needs in a similar sort of way.

Further distaste is expressed for the mass emotions that these cases can unleash. Some commentators link the sentimental grief that people express for conjoined twins when operations go wrong as part of the "Dianaisation" of Western culture. The scenes in Iran over the deaths of Laleh and Ladan - people cried openly in the street when broadcasting was interrupted to bring the news, and 20,000 mourners turned up in the small village where they were buried - suggest either that it isn't just the West which is privy to such media-generated hysteria, or that the phenomenon is older and more universal than the Diana effect.

Yet while it is undoubtedly true that the "freak-show mentality" persists, and that the human penchant for empty sentimental empathy can seem somewhat disturbing to the more emotionally fastidious among us, there are one or two other factors driving the widespread fascination with people born with this particular, and rare, developmental disorder.

First, and most obviously, there is sheer, straightforward awe at the surgical dedication these cases attract, which typically takes little account of national barriers, and therefore attests to the idea of a progressive and progressing international village. The Egyptian twins are being cared for in Texas, while the Iranian women were operated on in Singapore, and the Attard babies travelled to Manchester from the Maltese island of Gozo.

In a world in which international co-operation can seem like an impossible dream, and science is widely distrusted, these humanitarian feats are truly utopian enterprises, often funded by international charities.

Yet, this remains a minor component in the hypnotic appeal that these cases exert. Every day, after all, people are being ferried around the world in pursuit of advanced medical treatment. What sets the conjoined twins apart is the more fundamental comment on the human condition that their existence triggers.

It is banal beyond words to state the obvious, and suggest that the real horror of the thought of having to live as a conjoined twin is the endless enforced physical intimacy, and the inability to enjoy a single moment truly alone. Yet it is surprising how little we discuss, among all of our examinations of conjoined twins, how much these pairs of people embody so many of our modern fears.

Humans, as social animals, crave intimacy and revere the idea of perfect companionship as an attainable ideal. We are afraid of being by ourselves, being engulfed by loneliness, having no one to love or to be loved by. At the same time, we are besotted with the idea of personal freedom, individual independence, and the silent bliss of magnificent solitude.

More and more, we find it difficult to reconcile the two desires, catapulting ourselves quickly into intimate relationships, then retreating with the excuse that we "need some space". The idea that a less-than-ecstatic marriage is something to be worked at and endured is now alien to many of us, a cruel relic of a repressive past. We are convinced, as a liberal society, that the pursuit of our own personal happiness must come above all things, even our family, even our children.

A society that considers the most intimate of relationships to be quite disposable, unless they are nigh-on perfect, confronted with people who, far from having those choices, have been fused to a sibling from birth, is looking at a terrible negation of its self-absorbed values, and a physical affront to its dreams of personal self-determination.

Conjoined twins are a modern obsession and a modern nightmare, not just because we like to gape at those less fortunate than us, or because we like to feel emotion without responsibility, but because these people must face life without the tiniest of the freedoms that we have pursued perhaps too enthusiastically.

There is a sort of decadence in our fascination with conjoined twins. But there is a quiet recognition too that while life is demanding too much of them, others might be demanding too much of life.

d.orr@independent.co.uk

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