Saturday, April 24, 2010

The Little Mermaid

Shiloh Pepin was born August 4, 1999 in Kennebunkport, Maine. She had an extremely rare condition called sirenomelia, which meant that her legs were fused together, creating what looked like a mermaid's tail, hence the name. The condition is life-threatening, and almost always fatal, due to complications from missing organs and system failure. Shiloh died on October 23, 2009, aged ten, of severe pneumonia complicated by kidney failure. Her life is one of the longest known for someone with this condition, and the longest by far to be lived without leg-separation surgery. Shiloh lived her whole life with her "tail" intact.

Beyond these facts, I can add that Shiloh was a strong-willed, buoyant, outgoing child with a firmly positive self-image. I watched her online in the first of three TLC documentaries made about her. The first was made to document her condition as the world's only living mermaid. The two others were made because Shiloh herself charmed viewers as thoroughly as she did everyone who knew her. I won't rhapsodize about Shiloh, because I'm wary of the cultural narrative that casts disabled children as living angels or the like, but she was a lovely girl, and when I learned shortly after watching the documentary that she had died, I was very saddened. I found that she had a Facebook page, and I visited it, and read the announcement of her death.

Among the first condolence messages was one that struck a discordant note with me. I visited her page again, and couldn't find the original, but I found a number of others in the same spirit. Here's a sampling:

"You are walking & dancing now."
" can walk now on both of you beautiful legs"
"R.I.P. you can walk and run now."
" can run, jump and play like any 10 yr old should."

In the documentary I watched about her, and the clip from her Oprah appearance which I also watched, Shiloh had a very matter-of-fact attitude towards her different body. Her assertions included "Some people have two legs and I don't", "God made me this way" and, most memorably, "I'm a mermaid!", said at considerable volume. She enjoyed herself the way she was, and one of the reasons that she never had her legs separated was because she didn't want to.

I don't doubt that the people who wrote the above statements meant well, but their words are founded in the belief that any person who is different must necessarily wish to change this. In Shiloh's case, the evidence does not suggest that at all. Sirenomelia caused Shiloh a great deal of pain and trouble, forced her to undergo many onerous medical procedures, and ultimately caused her death, but the simple fact of not having two legs was not the problem. Certainly it wasn't an aspect of things that seemed to bother Shiloh herself, and if the body she was in wasn't her ideal for herself, there is still no reason to presume that two legs were part of her ideal either. She was ten - personally I'm visualizing a fantasy-style mermaid tail with sparkles in aquamarine (her favourite colour).

Normal is not necessarily the ideal. Normal is not the only wish of the different among us. Differences can be beautiful, can be treasured, can be so much a part of an individual that they would never dream of altering to suit the norm. Yes, even the ones you find disturbing or tragic or simply inconvenient. Even the ones that cause you to turn away in pity or disgust, whispering "I could never live like that". Even those. Whether we are labeled mermaid or monster, what many people want most dearly is simply to be themselves.