Saturday, March 22, 2008

Musing on Our Face and Bodily Image. Seed: Facial Disfigurations.

Earlier this week, Linda posted a link to a story about the French woman Chantal Sebire, who was found dead in her apartment a couple of days after being refused the right to euthanize herself. Sebire had a very severe tumor in her nasal cavity that caused extreme facial disfiguration. The tumor caused her to to her senses of taste and smell, and last October, her ability to see. She was a mother of three. She stated, over and over, that her condition caused her extreme pain. It ate away her jaws and stretched her eyes and nose area to a very extreme degree. At this time, her cause of death is still undetermined.

Sebire's case has caused me to spend a lot of time lately considering conditions that alter the face, and the ensuing trauma in dealing with the change to your previous outward appearance. I think this issue has strong ties to the feminist issue of bodily difference and media portrayals of the female person, and the non-gender specific issue of body change over time.

Many folks may be familiar with Autobiography of a Face by Lucy Grealy, which deals with Grealy's childhood cancer, which caused her to lose part of her jaw. She spent much of the remainder of her life dealing on different levels with surgeries and efforts to make her face appear more average. She also spends quite a bit of the book contemplating how she expressed herself as a feminine woman to men and society as a whole, which makes it a book feminists with disabilities should take a look at (in my view).

In addition, many folks may have seen shows on the TLC channel that deal with surgical intervention on extreme cases of facial disfiguration. If you have not seen these shows, they deal with cases where people not only look different but are culturally and physically disabled by their conditions. Doctors try to repair the faces to something approaching averageness, and depending on the situation, people try to work on the involved person's self esteem. This is not Extreme Makeover---the people on that show merely look different. The folks on the TLC medical shows are significantly disabled by their conditions. It definitely bothers me that this is framed as "entertainment."

Finally, in the past few years, I myself have become prone to temporary bouts of angioedema, or facial swelling. I don't know yet what causes this, because the circumstances are different each time. In each case, I have severe swelling of my lips and sometimes my cheeks and under eye area. Sometimes just one lip is affected, but each time it gets worse, so I have an Epipen in case it ever affects my throat or breathing ability. My angioedema often looks something like this: It is not permanent and definitely not as scary and serious as Chantal Sebire's case or the people showcased on TLC.

The scary part about angioedema, for me, is that I have this terrible sense of fear and anxiety over having "lost my face." The last time it happened, I kept waking up in the middle of the night for about a week with a start, thinking the swelling was coming back (it had initiated in the middle of the night). The experience definitely revealed how important my normal face is to me, how deeply I like it and do not want it to change. And, when I have the swelling, I have to go out in public to the ER to get help, so I definitely experience the stares.

All this is most certainly not to place my angioedema problems at a level on par with Sebire's case, but to say that I think that losing your face as you know it is a tremendous psychological blow. One of the top issues for women with disabilities is most certainly body image and whether one appears attractive/approachable to others. However, another significant and related problem is how the media covers cases like Sebire's. Was facial reconstruction considered? Was she physically able to commit suicide? Was her pain relievable? Was she in counseling? Would the French treat this situation in a certain way culturally? It's really not clear, and it is damaging not to know because people leap to try to imagine what it would be like to be her. Including me!

Thoughts on this issue? I'm really putting this forward as an angle on our whole discourse, for more discussion.