Monday, February 1, 2010

13 Going on 50?

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This is really sad. The girl in the clip suffers from lipodystrophy, which causes the fatty tissue under the skin to deteriorate. Her face appears to be that of a middle-aged woman (although she's only 13) and the stigma of her condition has caused her mother to take her out of school due to the taunts and bullying. She wants a face lift, although how effective that would be in the long run is questionable. The coverage on Today was much better than that conducted by Good Morning America which was even more sensationalist and insensitive, but fundamentally, both news programs focused singularly on the social implications for the 13 year old of her appearance. Lipodystrophy also contributes to heart disease, diabetes, kidney failure and other life-threatening medical conditions that this young woman is likely to face as she actually ages. Her mother, who also suffers from the disease, has seven children, three who inherited Lipodystrophy.

I'm not discounting the desire to appear one's age--or to free oneself from a clef palate or other non-life-threatening, but life-quality diminishing condition. If I were to get breast cancer (goddess forbid), I would most certainly have breast reconstruction surgery (although Twisty at I Blame the Patriarchy makes a good case for why this choice should not be the default or any more valid than living proudly with one's post-operative chest).

I do think that this story uncovers several anxieties about aging and the tragedy of the existence of the ugly, or non-beautiful in this world. Dealing with a bus driver refusing her a youth pass on the bus is serious and upsetting. The bullying she experiences at her local school denies her right to an education and should be dealt with by the school system appropriately. Her mother expressing the wish that she had never had Zara--that because she inherited this condition it would be better that she not have been born at all is just too sad and should be deconstructed.

She is not beautiful, but should the tragedy of existence as a non-beautiful person be cause for the wish for non-existence? Does the mother mean she should have received genetic counseling when she considered pregnancy or became pregnant? These are two very different questions.

I was very uncomfortable with this story and with the manner in which the news outlet dismissed the probability of heart disease, diabetes and kidney failure to instead focus on the appearance of advanced age. Of course, without that "freak of the week" quality, a story about a 13 year old girl with a non-appearance impacting genetic disease that might result in heart disease, diabetes and kidney failure would never make it onto our version of "morning news."

1 comment:

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