Tales of the Fedora

I haven’t done this sort of thing before, and I certainly don’t want to get in the habit of making controversial posts or creating a debate for things like this. I just wanted to make my own point of view known.

This is surrounding this story about a family who took medical action to prevent their brain-damaged daughter from, essentially, growing any older. Naturally this story has a lot of vitriol on both sides. I, however, feel the need to comment on this story — people also complain that I don’t post enough, so I’ll try something new.

It’s been compared to eugenics. It’s been called deplorable. It’s been called an action of convenience. In case you didn’t read the link, an anonymous family in the state of Washington has medically stunted the growth of their brain-damaged daughter. They did this through hormone treatments and surgeries. On the face of it the entire affair seems cruel and horrifying. However, I have to agree with the parents.

They made this decision because they had (at the time) a six-year-old daughter who had been brain-damaged and severely physically handicapped since shortly after birth. This little girl can’t talk. She can’t walk, she can’t talk, she can’t move on her own, and she can’t even swallow food — she’s fed by a tube. This child did what all children do — they grow up. The problem is that any child has troubles going through puberty, but imagine that you’re incapable of doing anything about it yourself. You’re a tiny consciousness trapped in a body that doesn’t function properly. The parents consulted with doctors and arranged for her to be sterilized, and hormone treatments administered to counter the natural processes of girls as they become women. Essentially this girl will no longer grow. The hormones will keep her from gaining weight or developing any further.
Many critics of this situation have said that the parents made this decision for their own convenience.  Certainly that’s true.  With the girl no longer growing bigger and heavier she won’t develop bed sores as badly.  The parents can move her around more easily, take her places and treat her like a person — even if she’s unresponsive.

Some have said that it smacks of eugenics, the process of weeding out impure genetics through chemistry and controlled breeding. To that I only have to ask: what kind of parent would a girl like that make?  How would she be able to bring a pregnancy to term given her condition?  I won’t go into the quality of man that might be involved in getting the girl pregnant.

Various advocacy groups for handicapped people are upset because they see it as a slippery slope.  What if someone isn’t as severely handicapped, and the parents make a similar decision?  I agree that it’s a troubling development, and a little scary.  But I believe that it’s the parent’s decision, or if the person is of sound mental capacity it’s his or hers.

Why do I hold these beliefs?  Because my sister is severely mentally handicapped.  Our mother spent 28 years caring for my sister.  My sister has endured 31 years of being cared for by others, everything from changing of diapers to feeding.  Changing clothes to carrying from one room to another, or from a wheelchair to a car, or her bed.

I don’t know if my parents would have made the same decision about my sister.  I do know that when she was born she wasn’t expected to live beyond three months.  Then doctors cautioned that she wouldn’t live past three years — but my parents unequivocally agreed to care for her and never to give up on her.  Three decades later she’s still going.

Seeing this firsthand I know what that family in Washington is feeling.  I know what sort of decision that was, and I believe that it was the right decision for the time.  They haven’t given up on their daughter, they’re trying to give her a comfortable life.

This entry was posted on Thursday, January 4th, 2007 at 11:38 am and is filed under Miscellaneous. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.