Helen Rittelmeyer, who I know pesonally, has written an interesting piece for Doublethink Online. The gist of it below:
My sister’s genetic disorder is too unusual to have a name. If it seems like the person I’m talking to won’t understand a medical description—grand mal seizures, nonverbal, severe-to-profound mental retardation—the layman’s version is that she’s a 10-month-old mind trapped in a 20-year-old body.
I am not often asked whether there is a cure. When I heard the question for the first time, only a year ago, my answer, which appalled the questioner, was that my family probably wouldn’t be interested in one.
The rest of the article explores here answer. While I feel for Mrs. Rittlemeyer, I think part of the reason that I disagree with her is that she seems to have removed the agency from the disabled. In particular, she seems to be focused on the sacrifice of others around the disabled, rather than in looking at the reaction of those who could be cured. I know, this an autonomy-based conception of an individual, but fundamentally, any other view leaves individuals as agents for others, not as capable actors on their own. Being loved and love as sacrifice is important, I feel unchosen hardship as identifier for an individual is not necessarily the best one. This is why we try to create conditions for individuals to succeed when they impoverished socio-economically. While the struggles they go through to escape or to survive become a part of the individual, we wouldn’t wish them on others. Suffering from being poor is hard. I imagine other ‘negative’ conditions would feel the same.
Still, this is a topic I need to think about more. That’s just a reaction. Given my response, it seems the elimination of homosexuality might be its logical conclusion. I’m not too sure how I feel about that.
