June 03, 2004

UGLY

Look it up on Webster online and we get:

Main Entry: :ug·ly
Pronunciation:
Function: adjective
Inflected Form(s): ug·li·er; -est
Etymology: Middle English, from Old Norse uggligr, from uggr fear; akin to Old Norse ugga to fear
1 : FRIGHTFUL, DIRE
2 a : offensive to the sight : HIDEOUS b : offensive or unpleasant to any sense
3 : morally offensive or objectionable
4 a : likely to cause inconvenience or discomfort (the ugly truth) b : SURLY, QUARRELSOME (an ugly disposition) (the crowd got ugly)
- ug·li·ly /-gl&-lE/ adverb


and right there in the dictionary is my problem. The conflating of two concepts---reprehensible and unattractive to the senses.

While I can see the connection in terms, too often, it seems to me, ugliness and immorality are joined together as one concept, at least as far as books and television go. Rare is the heroine who isn't beautiful, or would be if she just fixed up her hair. There are exceptions, and I am glad for them, SHREK of course, and Jane Yolen's SLEEPING Ugly, generally ugliness is a curse word. While this has always bothered me it started to bother me a lot more when I found out on had this genetic illness called Neurofibromatosisbromatosis which can cause disfigurement, among other unpleasant things (LD's, scoliosis, deafness, blindness just to name a few) and the it is gene dominant.

I have had no real problems from this illness...I didn't even know I had it till I had a couple of children (my parents told me at that point...I have no idea why they waited so long). Many people don't realize they have the disorder until after they have a child who develops the disease.

The thing about this disorder is there is no way to predict how the child will be affected. A parent can have a severe form of the illness, and the child little or no problems, or the reverse.

I just pray my child, the one that has the disorder, never has more problems than the very mild LDs that already exist. I look at this child and I worry sometimes; the child is reaching puberty, and hormones affect this disorder. I worry about her sight, her hearing, and the face my child might someday carry out to the world--and how so many people might judge my child's face as the soul.

I've raised my child to know the inside is what matters, because I know half the battle isn't what other's think of you, but what you think of yourself-- yet the cruelty still hurts.

And I worry. And it makes me sad that this matter, physical beauty, should count so much.


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