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One of Us 

The Anatomy of Acceptance

In 1908, in Brighton, England, two sisters were born attached to each other at the base of their spines. The conjoined twins, Violet and Daisy Hilton, soon parlayed their unique anatomy into a career in show business, dancing their way through the vaudeville circuit in the United States, meeting Bob Hope and Harry Houdini, and appearing in movies. The Hilton sisters were immortalized in Tod Browning’s 1932 film Freaks, which featured real sideshow performers with abnormal anatomies, including, as one reviewer has noted, “Johnny Eck the Legless Boy, as well as Zip and Pip, microcephalics whose appearance in this film inspired cartoonist Bill Griffith to create his comic strip, ‘Zippy the Pinhead.’”

The film, which was banned in Britain for thirty years, and shown only in heavily edited form in the United States, tells the story of a community of sideshow performers who initially accept the beautiful (and “normal”) trapeze artist Olga when she marries one of their own, a little person named Hans. But her affection proves fleeting, and the freaks soon learn that she only married Hans for his money and is plotting with her secret paramour Hercules, the circus’s Strong Man, to poison poor Hans and make off with his fortune. “One of us!” is what the small troupe of outcasts chanted when they first welcome Olga into their community; eventually it becomes the chilling coda of the film, as the freaks track down and punish Olga by disfiguring her and literally making her one of them. The final scene of the film shows Olga, now herself a freak, the object of the horrified gazes of the sideshow spectators.

Alice Domurat Dreger chooses the refrain “One of us” as the title of her new book, One of Us: Conjoined Twins and the Future of Normal, and her purpose, like that of Browning’s cult film, is somewhat subversive. Dreger, an associate professor at Michigan State University, wrote the book to “change assumptions made about people born with unusual anatomies,” and thereby “to change the context built around those people.” The author of a previous book on hermaphroditism, Dreger also seeks to question “the extent to which anatomies do or must limit political and social identity.”

Dreger is not shy about stating her own view: contemporary society nurtures a “singleton assumption” that treats as an aberration the very real desire of conjoined twins to remain forever physically linked, refusing to view themselves as any less human for being permanently joined. As a result, our understanding of what is “normal” is deliberately narrowed. Although her occasional forays into the more abstruse realms of academic cultural analysis often feel forced, Dreger’s book taps into a longstanding and deep human interest in cultural reactions to anatomical abnormalities.

In the past few years alone, a great deal of attention has been given to conjoined twins. In 2003, the Farrelly Brothers released the movie Stuck on You, starring Matt Damon and Greg Kinnear, which told the story of linked brothers whose relationship is tested when one convinces the other to move to Hollywood so that he can become an actor. Dateline and other television news magazine shows have featured specials about conjoined twins’ separation surgery, and in the past year, newspapers around the world have carried stories of conjoined twins from Virginia, the Philippines, Egypt, and Uganda. The separation surgery of 29-year-old conjoined twins Lalah and Ladan Bijani of Iran sparked a media circus in 2003; after the surgery in a Singapore hospital resulted in their deaths, their adoptive father sued for malpractice the surgeons who performed the unsuccessful operation.

Statistically rare — most experts place the rate at one in 200,000 births — conjoined twins usually don’t survive: Dreger notes that “40 percent or more of conjoined twins are stillborn” and “another 35 percent die within one day as a result of profound medical problems.” But history has yielded conjoined twins who lived full and healthy lives. The original “Siamese Twins,” Chang and Eng Bunker, lived until the age of sixty-two, both having been happily married and having fathered children. The County of Kent, England, still celebrates the “Biddenden Maids,” twelfth-century conjoined twins who apparently lived happily for thirty-four years before one fell ill and died. Legend has it that the other twin refused surgery to remove her expired sister, saying, “As we came together, we will go together.” In fact, as Dreger notes in her book, in contrast to what the media and medical establishment suggests about conjoined twins, the Bijani sisters from Iran were unusual in their desire for separation surgery. Most conjoined twins don’t seek separation.

But society has not always treated such departures from the normal with compassion. As the London Telegraph recently reported, a photographic exhibit opening this spring in London has been denounced by some critics as promoting a “pornography of disability” because of its lurid images of conjoined twins, bearded ladies, and Joseph Merrick, the “Elephant Man” (who is believed to have suffered from a rare disorder called Proteus Syndrome). As one critic told the paper, “We live in a world now that’s so full of discrimination that the freak show isn’t behind us.” Others have defended the exhibit, including the curator, a historian at Sheffield University, who said, “To sanitize history by pretending that these shows never existed is to diminish the humanity of those involved and the unique environment of acceptance that was created for them in the fairs. There was an element of choice involved — as well as the need to eat — and human curiosity about those considered ‘freaks’ by their society is a very powerful force. Think of the Jerry Springer show today.”

Marshalling many historical examples, Dreger argues, counterintuitively, that previous eras were actually more accepting of physical differences such as conjoinment than our own, and therein lies a lesson. Although, as the opening credits of the movie Freaks remind us, “the love of beauty is a deep-seated urge which dates back to the beginning of civilization,” it is also an urge that can lead to harmful extremes. Dreger concludes her book by arguing that “in the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able — indeed, even expected — to employ medical technologies to alter one’s anatomy and make it more socially advantageous.” But as the history of conjoined twins makes clear, the attempt to eliminate every perceived imperfection can have unintended consequences for society as a whole, particularly when that impulse leads to a winnowing of who we will accept as “one of us.”

The Editors of The New Atlantis, "One of Us," The New Atlantis, Number 5, Spring 2004, pp. 109-111.