Visceral reactions to deformity

[pegkerr]

I ran across an article about a young girl from Haiti who is having an operation to have a 16-pound tumor removed from her face. She suffers from Polyostotic Fibrous Dysplasia, a nonhereditary, genetic disease that causes bone to become "like a big a bowl of jelly with some bone inside," according to University of Miami School of Medicine's Dr. Jesus Gomez, one of a team of nearly a dozen specialists performing the 14-hour procedure. There is an article about the case here. Strong Warning: there is a picture with this article, and it is really quite shocking. I am not kidding.

I found my own internal reaction looking at that picture interesting. I could hardly bear to look at it. I think that there is something so deeply-rooted in my reaction that I suspect it's instinctual: it's as if something in my genes cries out "That's wrong, wrong, wrong!" and--well, the girl's mother in the article describes what her daughter has suffered in her home in Haiti because of the deformity. People will cross the street to avoid her; taxis refuse to stop for her. Even if a condition is not contagious, people experience a visceral, deep-rooted revulsion when they look upon deformity. Why so? I imagine that it is instinctual, one which may, for example, discourages mating with someone who looks "irregular." Thus, this instinct may have an evolutionary purpose: genes which cause deformity might shorten life, and so that if no one will mate with that person, the dangerous genes will be eliminated from the gene pool.

It is not just deformity, I guess, but the sense that we need to feel a sense of bodily integrity, that all the parts are there, and they are all shaped correctly. Some people find amputees deeply disturbing. I believe that the parents of Abigail and Brittany Hensel (a pair of dicephalus conjoined twins) seem well-adjusted to their daughters' predicament, but the identity of the town in which the family lives is kept secret, again, I think, because people would react so strongly to the fact simply that they exist.

I truly dislike this reaction in myself. I don't like anything which interferes with my own personal value of meeting people and interacting with them based upon sympathy and openness. It is an instinct which can be overcome, by force of will, but it is difficult for some to do so (an interesting study of this phenomenon was done in the play and film The Elephant Man, an account of the haunted life of Joseph Carey Merrick). Usually, if the revulsion is overcome, it is replaced by pity. The ideal, I think, is to then progress to the point where one reacts to the person who is deformed as a person--not ignoring the deformity, pretending it is not there, but accepting it, and getting to know the person without that deformity being the only thing known or thought about the person.

I remember when I was a kid that there was a young boy who was severely scarred in a fire who went to our elementary school (he had lost several fingers, and had facial scarring). My sister Cindy suffered such an overwhelming and visceral fear of simply being in his presence that sometimes it was a struggle for Mom to convince her to go to school. She talked incessantly about "the boy who was burned" and every day gave us a blow-by-blow account of whether or not she had to pass him in the hall, and if she did, whether she managed to avoid crying, or looked at him or not. (Perhaps she was particularly disturbed because the boy had gotten his scars in a fire which had killed his sister, and so he represented to Cindy someone whom death has brushed quite closely. I never have asked her if that was it, or simply the scars themselves.)

Eventually, "the boy who was burned" joined our church, and he became not "the boy who was burned," but Scott to our family, and my sister grew more accustomed to seeing him around. He was a person, not a collection of burns, a walking accident. He became a human being, "imperfect" in a striking way, but then are not all we human beings imperfect?

Comments

[mamculuna.livejournal.com]

I had several students with very noticeable disfigurements--burns, thalidomide limbs, and some horrible skin disease. It was interesting that each of them had become an unusually delightful person, warm, friendly, and not shy--always encouraging to others. I wondered whether they do this in compensation, or because people treat them that away. But I too had that experience of losing sight of the disfigurement once I got to know them as people.