Quality of Life: A Little Rant

This video is of our baby girl Evanna.

For those who aren’t yet following her story (her Facebook Community Page is here and her website will be up soon and linked here once published), she was born with spina bifida, hydrocephalus, chiari II malformation, and clubbed feet.

Here in the United States, only 36% of babies diagnosed with spina bifida are ‘allowed’ to live, and in other countries in the world, they actually pride themselves on having a near- (or actual-) 100% termination rate. The most mentioned argument is on the incredibly subjective ‘quality of life’.

I despise that argument on several levels.

First, did you watch the video above? Do you mean to tell me that this beautiful little girl somehow has a lower quality of life than, say, the average person? If anything, I’d argue that she clearly is far more joyful than most people.

Secondly, the argument presupposes that normally-abled people are somehow better than others. That certainly doesn’t seem right, or fair, or kind, or compassionate, or moral, or any of a hundred other attributes you might consider. Didn’t we have enough of the eugenics movement in the 20th century that culminated (in part) with Germany’s concentration camps? Have we not learned?

Most of all, I despise that argument because it says that my joyful, loving, expressive little girl isn’t deserving of life.

She is. She absolutely is.

This video is of our baby girl Evanna. For those who aren’t yet following her story (her Facebook Community Page is here and her website will be up soon and linked here once published), she was born with spina bifida, hydrocephalus, chiari II malformation, and clubbed feet. Here in the United States, only 36% of…