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

[hedwig-snowy.livejournal.com]

As a paraplegic, I have had a bit of this, but it is usually from adults who 1) Don't want to catch it or 2) goto the pity/help thing. I mean, it's nice when people offer to help with the chair when I'm getting out of the car at a store parking lot, but how do they think I got into the car in the first place? Since it has been 22 years, I have always took it in the best light and been polite about it, but sometimes you do want to say, "Here's your sign" or something. I don't, as I know there are others out there who may need help and you don't want to scream at someone just trying to help (no matter their reasons) as they might just pass by someone in need in the future because they recall me being rude to them over their offer of assistance.

Children on the other hand are usually more interested and stare not out of fear but out of curiosity. Sometimes they'll actually try and push me as if I was a big toy. I don't let what a 4-yr-old thinks bother me as it it just innocent, but I don't let them turn me into a toy either. :)

My first reaction to the girl was probably a bit of pity, but more happiness that they we able to help her. Now, we all can't be 'fixed' and some of us are happy with who we are. It's nice that your family accepted Scott as who he was rather than what he looked like, but that was because you took the time to get to know him.

There was a book I read about 10 years ago called No pity (http://www.amazon.com/gp/product/0812924126/qid=1134749812/sr=8-1/ref=pd_bbs_1/104-9425251-7010325) and, while it was a bit preachy, it did give me some insight into how others viewed me and how I viewed my self.

I somewhat think it's the difference between sympathy and empathy. I have met a lot of 'normal' looking people who are in much worse health than myself, but their suffering is hidden. If this is the worst thing to happen to me in my life, I will feel extremely fortunate. That's not compensating, just reality.

The one thing I have found to be universal is that being in or out of a chair doesn't truly make you a better or worse person. There are plenty of truly nice, caring, and intelligent people out there with disabilites (either internal or external) and there are a lot of jerks as well. The disability may (if they let it) exacerbate their particular personalities, but it doesn't truly change who they are. If they were a jerk before, they'll probably still be one. And vice versa. Someone wouldn't automatically like someone who they just saw on the street (in most cases). I would hope that they wouldn't dislike them either.

[jbru.livejournal.com]

Living with a disabled person who has what some would call a "deformity" (obesity), has taught me a lot about how people react to the differences they see in others. What I have learned is that, while my initial reaction may be negative (e.g., there is a gamer who was scarred in much the same way, perhaps even more severely, than the boy you mention that I would ru into every year at Gen Con), that I can set that reaction aside and teat the person with the same care and respect I give anyone else. In some cases, this means offering some form of assistance. (For example, I'll sometimes see Doug Friauf at a con party and if he doesn't already have one, I'll offer to get him a drink.) More often, it's just saying a polite hello and engaging in a banal conversation. What Ericka tells me she appreciates most is someone offering or doing something helpful and sensible.

[cakmpls.livejournal.com]

I hold my daughter R up as my model: She first met Ericka when R was about 11 and very much into appearance. Ericka was at Minicon, in her chair. They chatted about some girly thing for a while. Then about a year later, I had reason to mention Ericka to R. I said something like "You met her at Minicon. She uses a wheelchair."

Did R respond with something about Ericka's size? No. What she said was "Oh, you mean that woman who had her nails all done fancy?"

[pegkerr.livejournal.com]

That's a wonderful story.

[cakmpls.livejournal.com]

And it's one of the ones I remind myself of when I want to strangle her! She is not an easy child to raise, nor an easy person to live with, but she rises to her challenges amazingly, and on top of that she has characteristics like the one shown by this story.

[http://users.livejournal.com/anam_cara_/]

I remember once reading how researchers, biologists and psychologists were looking into the genetic basis of common human reactions to snakes and spiders- for many people it is a very viseral reaction, regardless of experience or rationale (separate than phobias though). I think this is very much the same in some incidences, but not so much in the mating aspect, but in the self-survival instinct... why do we know it's not contagious (deformities not caused by accidents or events)? Because of the knowledge we've gained and learned... thousands of years ago (even just mere hundreds), one couldn't know that with such certainty. Also take for example societal species- an individual with dramatically different coloring is driven away- not just because none want to mate, but one individual catching the attention of a predator could endanger the entire pack.

So in part, I agree, it can come from a very viseral place, and as humans, you add so many more layers of complexity.

I can sympathize with your sister, because as a child, I was very fearful of the 'worst case scenario' of a house fire (it was just something that stuck in my head as a fear). Also, I think people who are extremely empathic struggle because certain deformities represent such pain. It is wonderful however, that in your sister's situation, her perception could eventually be changed.

[skylarker.livejournal.com]

I agree that empathy may become part of the problem. Some people tend to interpret what they see in a tactile way and over-identify with injuries they see in others.

[cakmpls.livejournal.com]

This topic hits pretty close to home; I think you know that P (our 18-year-old son) has noticeably deformed hands and has to use unusual motions to do things that involve hands and arms. In his K-8 school everyone knew him, and he was just P to them. They accommodated him without making a big deal of it; two different friends even took off and put on his socks, shoes, and braces when he stayed overnight with them. Everyone liked him, and why not, as he has a delightful personality.

It was different in high school. To the best of my knowledge, no one ever mistreated him--that high school has an extensive special-ed department, and a number of students with more noticeable disabilities than P's, so students are used to seeing others with disabilities. But neither did they reach out to befriend him. I don't want to say anything more about this, for the sake of his privacy.

And this is a young man who is "normal" looking (I think he's good-looking, but I'm his mom!) facially; there is nothing about him that anyone would flinch at except his hands and perhaps the way he uses them. I can only imagine how much worse it is for people who have facial deformities.

I think that "disturbing" is a good word for my feelings about most deformities. I'm not sure, but I don't think, that I have ever felt "revulsion" at a physical deformity. I tend to jump right to pity, in terms of "what must that person have to go through?" If the condition is the result of a trauma, as with burns, there's the added thought of what the person did go through.

[wintersweet.livejournal.com]

Coincidentally, I just read a book translated from Japanese with an English title of _No Body's Perfect._ Usually I hate inspirational books, but this book is very interesting, culturally and otherwise. It's by a Jap;anese man who was born mostly limbless. I visited his website and he's gotten even more handsome than the photos in the book; I was wondering how his facial attractiveness has probably contributed to the positie reception he wins from many people. Ah, humans,

[heavenscalyx.livejournal.com]

I'm occasionally disturbed by my own reaction to such challenges -- an automatic clinical distancing, coupled with curiosity. I guess it's something like what medical personnel have to cultivate, though I think my level of curiosity (what made this happen like this? what's the name of this disorder? is there a pattern here?) may come from the genetic counseling training I received in grad school.

My reaction to this article (I'd read a brief article about her yesterday, but there was no picture with it) was my typical one: I went off and looked at information about the disease. After a few minutes, I realized that I actually know someone with, if not this exact disease, something extremely similar. And then I was able to tie in his own surgical experiences to this girl's, and so forth.

I've had a similar clinicizing reaction most of my life, though; I remember a boy at our church when I was a teenager who had epidermolysis bullosa, a genetic condition that causes skin blistering. He was always wrapped up in gauze, and I spent a good deal of time trying to figure out what he had and why. My mother finally noticed my interest and showed me an article she'd run across in the local newspaper, where the boy's mother had talked about his condition.

If you're at all interested, there's a brilliant book that talks about facial deformity from the inside: Autobiography of a Face by Lucy Grealy. Grealy had cancer of the jaw when she was young, and underwent all sorts of reconstructive attempts that mostly failed.

[jbru.livejournal.com]

Given your reaction to physical abnormalities, you may or may not be interested in the post on Laurie Edison and Debbie Notkin's blog entitled, "Armless, Nude, and Sexy as Hell." (At least not until you're home from work.) It's about Alison Lapper and an earlier post of theirs links to a story about the statue of her while pregnant that's been erected in Trafalgar Square.

[aome.livejournal.com]

I don't know if the page content changed or if it's because we have javascript blocked (which often changes how a page is displayed), but I cannot see the picture.

It's made me think, though, about another thing. Periodically, our adoption agency's China mailing list will post about a "waiting child" - usually this is a child with some minor medical issues, like cleft lip or somesuch - asking if anyone is interested in adopting them. (They don't spring "waiting children" on you unless you indicate you're open to that on your application, or offer to take a specific child like this.) Anyway - one child was a lovely baby girl, presumably ordinary in every way, except she was missing all the fingers on one hand and had only a small thumb, due to a birth defect. There was part of me that felt, "Well, if that's all, that's not such a big deal" - and, in fact, I've known a few people with similar hands - but there was also part of me that felt - our girls will already have some issues about being singled out, not looking like us, and being a racial minority. And I wasn't sure I was up to deliberately walking into adding "being teased for missing her fingers" to the mix of emotional stuff we'll be helping them through as they grow. You get what you're given, of course, and you deal with it accordingly - but to ASK for making a deformity part of the family - I wasn't sure I had what it took.

The "deformity" I'm hypersensitive to is cerebral palsy, because of my brother. I can spot it a mile away, and it only brings up negative associations in my mind.

[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.

[callunav.livejournal.com]

I can't respond to this properly because I'm at work and have no brain and little time. But It's something I've thought about quite a bit. I like your insights. I wish I could get the things I've thought to cohere right now, but I can't.

Two things, though, that do leap to mind. The first is the recollection of the first counselor position I ever worked. I was working with adolescent girls who were multiply handicapped - all of them were blind, most had impaired mobility, and most were severely cognitively impaired as well. Only a few were able (or willing, I suppose) to communicate verbally. The first day was overwhelming. I just rolled with everything. By the end of the first week, I felt right at home. Later, someone asked me about the work I was doing and I described it, and she said, "That must be really depressing." I surprised myself as well as her with how immediately and completely I disagreed. I told her, without thinking about it, "Not after the first two days. It's sad sometimes, but that's not the same thing." Later, thinking about the conversation, I concluded that 'depressing' is only a viable reaction if you're an outsider. Once you're involved, it can be sad, frustrating, infuriating, funny, and more, but not depressing. (That was /my/ feeling, and it was about working with these kids, not about being one, or being a family member. I would imagine there would be periods of depression, in either of those cases, for most people. But that's a really different kind of thing - being personally depressed because of conditions of your life - from being depressed /about/ other people. That's an outsider thing.

The other is...well, very trivial. But as you know, my hand changed shape in this past year. My left thumb is, essentially, mildly deformed. Now that's a wildly minor kind of deformity compared to most of what's been discussed here, and I'm not trying to, I don't know, claim membership to the exclusive club or something. The social problems simply don't apply - people don't notice the thumb unless and until I bring it to their attention. I imagine children might, but even they don't always. But the adjustment period for me, in trying to come to terms with my body looking different from how it had always looked - looking *worse*, looking *wrong*, and having no prospect of it ever going back to "normal" has been a very strange one for me. I still have difficulty with it from time to time. So I think about what it's like for anyone whose body changes significantly, in a way which says DAMAGE every time you look at it. It's very disturbing. I wonder about what would help. It's interesting.

[frozen-jelly.livejournal.com]

I am not shocked by that picture, simply bcause in summr i watched a documentary entitled 'The boy with a tumour for a face' which i admit I only tuned into to see what on earth they were talking about, I couldn't imagine it. (If you google the title of the docu, you can find pictures, in some ways his is worse to me, because he is just a three year old boy)

I don't think its something you can control. Initially at least. After all studies have shown beauty=symmetry, so someone with a completely asymmetrical face is more likely to be regarded as not beautiful.

[darkthirty.livejournal.com]

Empathy reaction, no place for it often, or rather, it's really uncomfortable. But it is not necessarily a negative reaction.

For me a bigger challenge was learning to not immediately dismiss alcoholics - spiritual deformaties, you might say. Working where I do, at a community centre in the downtown eastside of Vancouver BC, there are many recovering alcoholics, as well as addicts. Some are quite functional, these spiritually deformed, as it were. I'm being mostly serious here.

At any rate, my visceral response to physical deformity is honestly far less than my visceral response to what I have here called spiritual deformity, or social deformity, if you will...

[http://users.livejournal.com/anam_cara_/]

That is a very interesting insight- I hadn't thought of it that way... I think that I react noticeably negatively regarding alcoholics as well- due in large part of past history and distrust, but I really see what you are saying here.

[cathemery.livejournal.com]

You might find this article interesting, if you haven't seen it. It is called The Uncanny Valley and it "plots emotional response against similarity to human appearance and movement". Which probably doesn't explain enough, but I don't want to quote half the article trying to tell you what it's about.

http://www.arclight.net/~pdb/nonfiction/uncanny-valley.html

[diony.livejournal.com]

This article is the first thing I thought of when reading the post, so a strong second on the recommendation! It's both fascinating and very readable.