Joseph Merrick (1862-1890) is arguably the most famous sideshow freak. After Merrick acquired his disfigurement in his youth, his family abandoned him as a teenager, eventually leading him into the sideshow as “the elephant man” until a surgeon at the London Hospital offered him an alternative path that still included being surveyed and examined. His story has been told many times over, as a Tony Award-winning play and Academy Award-winning film by Director David Lynch. Its most recent rendition, starring Bradley Cooper, is on track to make it to Broadway this fall.
As was common for most sideshow performers, Merrick’s life story was largely an open book, but one element remains a private mystery – the medical explanation for his condition. Ever since Merrick spent time in the London Hospital, doctors and scientists have searched for answers. Some believe it to be elephantitis, which earned him his nickname, while others have recently suggested that it was caused by a rare disease called “Proteus syndrome.”
This week brought news that University of London scientists are hoping to find answers by analyzing DNA extracted from a piece of Merrick's skeleton, which has been preserved and publicly displayed by the Royal London Hospital. The announcement is not surprising since many people have been tempted to try to solve riddle. But the project can claim no real medical justification or social benefit.
While the sideshow fell out of fashion by the early twentieth century, historians have argued that the voyeurism that drove them has continued in a new realm – the hospital (1,2,3). Just as Merrick was taken in by the physicians who wanted to fully examine and document his anomalous body, many other famous sideshow performers ended up on display in hospitals, a process that continues today. Is the quest to diagnose Merrick’s condition about improving medical knowledge and practice or is it a reminder that curiosity is not neutral and can sometimes lead us to put our own desires to know above all else?
Historian of medicine Alice Dreger has advocated for the burial of another sideshow performer’s skeleton, suggesting that:
Keeping Charles Byrne’s skeleton on display sends a terrible message about the modern-day relationship between physicians (especially surgeons) and people with unusual anatomies. It says that such people do not have an equal say in their fate, that they can be readily exhibited to the public as symbols of nature’s freakery or medicine’s miracles, whether or not they wish to be. Moreover, it says that being considered a freak is enough to exempt a person from the social norm of respect, especially in dealings with medical and scientific professionals (138).
Even in death, the spectacle of physical difference continues. Some people with physical anomalies have gone so far as to ask their loved ones to bury their remains in cement, knowing the risks of being exhumed. Their fears are confirmed in Merrick's case. As the lead scientist in the efforts to extract DNA from his skeleton explained, “We can’t just mash a whole amount of it up. We have to preserve it for future generations because it’s an important historical record.”
Grinding up a piece of Merrick’s skull may satisfy a bit of scientific curiosity, but I fear it will tell us much more about our unceasing desire to gawk at bodily difference without respecting the fact that these bodies were once inhabited by real people.
Posted in Arts & Culture, Bioethics, DNA Forensics, Disability, Emily Beitiks' Blog Posts , Sequencing & Genomics
Comments are now closed for this item.
Comment by Kelly, Aug 27th, 2012 7:09am
I'm hesitant to agree fully with you (and Alice), Emily, because I do see value in "just knowing." Not necessarily for the scientists who are doing the research, but for the people who are diagnosed with similar, rare diseases - whatever it is Merrick may eventually turn out to have had. There's a lot of power in being able to look at someone well known and saying "like me" - it's the power of advocacy that Christopher Reeve discovered, that Michael J. Fox utilizes, etc. It's why diseases and illnesses tend to have a public famous face; it's not just for fund-raising, but also for people who are looking for a little less alienation and the ability to say "like me."
Merrick had a pretty awful childhood/teen years, by anyone's definitions - but he also ended up doing something rarely seen at that time: he took control over his life and made autonomous decisions, which did include being exhibited in side shows.
Merrick's story ultimately contains a lot of hope about the grace of humans, and if a DNA sample can strengthen the bond of that hope between his life and that of someone living today, is that such a bad thing? I'm not convinced.
Comment by Mae Stroshane, Aug 24th, 2012 4:26pm
The Merrick family has not reclaimed it, saying Joseph knew full well his body would be preserved and studied at the hospital. However, since the skeleton was completely scanned for a TV documentary last year, they could certainly construct a precise replica. Then the bones - which are disintegrating anyway - could be laid to rest in an undisclosed location.
Comment by Alice Dreger, Aug 24th, 2012 10:23am
Thanks for this, Emily. I completely agree.
A really excellent unpacking of what really happened to Merrick can be found in Nadja Durbach's book, "Spectacle of Deformity." I highly recommend the book.