We discuss often the ways in which medicine prolongs life: controlled infections with antibiotics, life saving organ transplants, vaporized tumors and the like. Just as important are the ways in which medicine improves quality of life or gives explanation to the things we fear: the disabilities we can see. A friend of mine who teaches freshman English invited me to attend her school’s production of ‘The Elephant Man” by Bernard Pomerance. The play, set in the late 1880s, chronicles the journey of the real-life Joseph Merrick, a man so naturally deformed since childhood that he was displayed as a show. His swollen arms, face and legs made those who saw him believe he was half-elephant, half-man. Later abandoned by his show manager, Merrick, goes to live in a London hospital under the care of Dr. Frederick Treves’s, a young surgeon who wants to study the cause of Merrick’s deformities for the interest of science. I knew little of the play before watching but found its content and historical background incredibly relevant to the intersection between medicine and the culture of disability.
For many of us, our sicknesses are internal or even silently waiting to reveal themselves. For those however whose disease can be seen and not tucked away under clothes and skin, medicine can help bridge understanding in order to decrease fear. Technology has played a great role in this bridge: dispersing information about diseases and allowing us to communicate what we know or wish we knew.
While it is unknown the true cause of Merrick’s disability the leading diagnosis is Proteus Syndrome though Neurofibromatosis Type I was previously (and continues to be) entertained. Proteus Syndrome causes abnormal growth of bone and skin and results in tumors throughout the entire body. Despite how he appeared, Merrick was found to be incredibly intelligent, insightful and curious about the world. Under Treves’s care he made friends and had visitors from all ranks of life including Princess Alexandra of Wales. He unfortunately died at the premature age of 27. It is theorized he died from asphyxiation caused from the weight of his head crushing his windpipe when attempted to sleep lying down instead of sitting as he usually did.
The play on his life is not a particularly uplifting one — it reveals the dark side of superficial judgement and casts light on the eternal tug-o-war between science and faith. It does however, remind us that medicine can have a place simply in it’s pursuit of understanding even if the picture is incomplete. These endeavors can help us to no longer marginalize or make a mockery of the things that are externally different from ourselves. Medicine, however, should not simplify our differences to the degree that nothing else about the individual matters.
